Parent Project Muscular Dystrophy’s Volunteer Leadership Toolkit Thank you for taking a moment to read through our Volunteer Leadership Toolkit. Before you read any further, however, please take a moment to answer the following questions: 1. Are you ready to make a difference for boys diagnosed with Duchenne muscular dystrophy (DMD)? 2. Are you ready to feel empowered by contributing toward DMD progress? 3. Are you willing to roll up your sleeves and take an active role in creating change for this generation of children with DMD? If you answered yes to any or all of these questions—even if you answered “maybe”— YOU are ready to help Parent Project Muscular Dystrophy (PPMD) lead progress in DMD. On behalf of everyone at PPMD, I would like to extend our most sincere gratitude for your assistance with our fundraising efforts. Thank you for taking the time to read through our Volunteer Leadership Toolkit. It is a comprehensive assortment of guidelines, documents, tips and advice to help make your fundraiser the very best it can be. It is because of great people like you—people who donate their time and money to our cause—that we are able to fund promising research, advocate for government funding and legislation, and offer the latest information on treatment and care for your sons and other young men with DMD. So once again, thank you. Leaders are ordinary people with extraordinary determination. We are so grateful for your leadership. It takes all of us working together to make a difference in the lives of boys with Duchenne muscular dystrophy. Most sincerely, Kimberly Galberaith Associate Executive Director 1 Where does Parent Project Muscular Dystrophy’s funding come from? Parent Project Muscular Dystrophy is a strong “grassroots” organization. Approximately 60% of our income is generated through fundraising events and donations from people like you. Approximately 30% of PPMD’s income is donated by corporations, and 10% is generated through foundation grants and program revenue. Of the 2,100 parents, grandparents and family members in our database, 30% have donated to the organization. In 2002, approximately 45 fundraising events were held across the country under Parent Project Muscular Dystrophy’s name. So what does this tell us? The statistics above confirm that PPMD actually falls into the average range for nonprofit fundraising. The average pattern, which is nationally observed: • • • 50-70% of an organization’s income comes from 10% of its donors. An additional 15-25% of the organization’s income comes from 20% of its donors. The remaining 15-25% of the organization’s income comes from 70% of its donors. Where do we go from here? We become fundraisers. If we do not continue to raise funds for Parent Project Muscular Dystrophy, the organization cannot move forward and continue to influence the Duchenne muscular dystrophy agenda. There are only two absolute rules in fundraising: 1. In order to raise money, you have to ask for it. 2. Once you receive a gift, you should thank the person who made it. The rest is a combination of trial and error. We can all do something to add to the bottom line. Figuring out what that “something” is seems to be the first (and often the hardest) step. After that, there is nothing you can’t do! PPMD is here to offer guidance, help and support throughout your fundraising endeavors. The following materials and templates should help you through the process. 2 Fundraising 101 No one wakes up one day and says to themselves, “Hey, I think I will become a fundraiser.” One is more likely to wake up and say, “Hey – I am a fundraiser.” There are a number of reasons why individuals get involved with fundraising. In the case of PPMD, most often our families decide to get involved in fundraising when they recognize how important raising money is to make our vision, mission and goals become reality. With this in mind, PPMD assembled this kit to provide you with basic fundraising ideas, statistics and facts that will help you better understand why this area is crucial for nonprofit organizations like PPMD. Did you know that… …there are more than 1.4 million charities registered in America today? …in 2002, nearly $241 billion was given to charities in the United States? …89% of American households give to charities? …the average household that gives to charity contributes $1,620 (an estimated 1.3% of the household income)? Why do people give to charities? What is the motivation? According to fundraising sources, there are seven “faces” of philanthropy. Below are brief explanations of these seven philosophies: The Communitarians: Doing Good Makes Sense Communitarians, the largest segment of donors (26.3%), give because it makes good sense to do so. Communitarians are typically local business owners who find that serving on boards and committees of local nonprofits can be good for business as a result of the relationships that often develop in such settings. Communitarians also believe that active philanthropy helps their communities prosper. The Devout: Doing Good Is God’s Will The Devout are motivated to support nonprofits for religious reasons: Many believe it is God’s will for them to help others. The Devout are almost always members of a local church, synagogue or mosque that is part of a larger religious group. The Devout channel nearly all (94.6%) of their giving to religious institutions. The Devout make up the second largest group of major donors (20.9%). The Investor: Doing Good Is Good Business Investors are affluent individual donors who give with one eye on the nonprofit cause and the other eye on the personal tax and estate consequences. Investors calibrate their giving to take advantage of tax and estate benefits and therefore want to work with nonprofits that understand these concerns. To achieve their tax, estate and 3 philanthropic interests, Investors donate to a wide range of nonprofits and are the segment most likely to support umbrella nonprofits such as community foundations. About 15.3% of major donors are Investors. The Socialite: Doing Good Is Fun Socialites find social functions that benefit nonprofits to be an appealing way to help make a better world while having a good time. Socialites are members of local social networks and interact with select nonprofits by offering support. While they seek opportunities to create fundraisers and social events to benefit nonprofits, Socialites are less interested in participating in the day-to-day operations or activities directed at constituents. Socialites tend to support the arts, education, and religious nonprofits. They make up 10.8% of major donors. The Altruist: Doing Good Feels Right Altruists embody the popular perception of the selfless donor who gives out of generosity and empathy to urgent causes and who modestly “wishes to remain anonymous.” Altruists give because they believe it is a moral imperative and because it helps them grow as human beings or evolve spiritually. Altruists make giving decisions without the input of advisers and are not usually interested in taking active roles in the nonprofits they support. In comparison to other philanthropists, a far greater proportion of Altruists focus their efforts on social causes. 9% of major donors are Altruists. The Repayer: Doing Good in Return Repayers tend to be constituents first and donors second. A typical Repayer has personally benefited from some institution, and now supports that institution due to feelings of loyalty or obligation. Repayers concentrate their philanthropy efforts on medical charities and educational institutions. They make up 10.2% of major donors. The Dynast: Doing Good Is a Family Tradition Unlike other segments, Dynasts typically inherit their wealth. The philanthropic motivation of Dynasts stems from their socialization: Giving is something their family has always stood for, and they believe it is expected of them to support nonprofits. However, younger Dynasts will seek out different philanthropies than their parents. Although Dynasts have been significant figures in philanthropy for some time, they now comprise only 8.3% of major donors. Source: Price and File, 1994, pp. 14-16 4 Getting Over the Fear of Fundraising Asking people for money is both the most difficult and the most important part of fundraising. Parent Project Muscular Dystrophy uses a variety of methods to ask for financial support. These methods include direct mail appeals, special events, pledge programs, merchandise, and more. One factor that influences fundraising is the fear of asking. After you have put so much time and energy into getting your fundraiser ready, what do you do if the people you ask say no? The truth is that people say no for many different reasons. Perhaps they give to other organizations, or they don’t have the money at the time. These factors have nothing to do with you personally. Try not to focus on the percentage of people who say no, and focus instead on those who say yes. You can take pride and gain a sense of accomplishment from every yes, as those who say “yes” might never have heard or known about the importance of the DMD issues if you had never asked for their support. Preparing to Ask When you begin to plan your fundraising approach, keep in mind that every individual, corporation and foundation is different. You will therefore get many different responses to your requests. As you assemble your list of individuals and corporations to approach, consider all the reasons these audiences may or may not oblige. For example, some of the reasons people say “yes” include: • • • • • • • • • • • They like the person asking. They believe in the cause. They get something in return for their gift. Tax deduction. They feel generous. They just got paid. They know their money will be well used. They want to support you – their friend or family member. They feel guilty saying no. They don’t have time to volunteer, so they give money instead. They liked the approach or the way you asked for their support. Asking Once you determine what you will ask for (donations, auction items, volunteer support, etc.), you are ready to begin. Remember, you already have the information you need. You know the facts about DMD and PPMD, and you know the type of support you are looking for. Be assertive and confident. If questions arise that you feel unprepared for, you can always say, “Let me get back to you about that,” or “I don’t know the answer 5 but may I have a representative from Parent Project Muscular Dystrophy get in touch with you about that?” Although it can cause anxiety to start a fundraising endeavor, it is a good feeling to know that you are able to set aside your own discomfort for the greater purpose of supporting the needs of the DMD community. 6 A Call To Action How Can I Get Involved? In order to make it easier to see where you might fit in best, we’ve separated the next section into three parts: Lead, Participate, and Support. In this section, we’ll help you determine which role is most suitable for you. If you have lots of time and motivation, we hope you’ll choose to become a leader to spearhead events and campaigns. If you have a moderate amount of time to donate, then we encourage you to participate by volunteering or attending other events. And if you are short on time and can’t commit too much, then we would value your support. Lead (more on taking the Lead role in the following pages) While taking the lead in a fundraising initiative requires a substantial commitment, it can be a very personally rewarding experience. Please consider taking the lead only if you have a high degree of commitment and enough time to do it right. Participate Nothing gives us more satisfaction than to see people actively participating in the events and campaigns we champion. For those who don’t have the time to lead an event, there are other ways you can help us raise money and awareness for Duchenne muscular dystrophy (such as volunteering or donating goods and services). We also encourage you to call us with any new ideas you have. There are many ways to help! Support Without the people who support us, Parent Project Muscular Dystrophy would be without funds, manpower, and inspiration. This section contains several suggestions for how you can support Parent Project Muscular Dystrophy when you have only a small amount of time to dedicate. 7 Getting Started as a Leader If you have decided to take the Lead in fundraising, you may be wondering what comes next. To make this process as easy and streamlined as possible, we’ve made a list of appropriate steps you should take to make sure your event goes smoothly. PPMD will help you along the way. Getting Started 1. Please contact Kimberly at (201) 944-9985 or write to Kimberly@parentprojectmd.org to let her know what sort of fundraising event you are planning to undertake. Included with these materials is an EVENT REGISTRATION FORM. Please take a moment to fill in the information and either mail or fax it to Kimberly at (201) 9449987. This registration form will help us keep track of all the PPMD fundraising events around the country and will help us serve you better. When filling out this form, keep in mind that the information you provide will allow us to list your event on the national calendar of events on our website. 2. Read the “Guidelines” section in this Volunteer Leadership Toolkit. It provides legal information and guidelines that are important to follow when fundraising on behalf of Parent Project Muscular Dystrophy. We do not mean to stifle anyone’s creativity or enthusiasm by insisting that each fundraiser abide by these guidelines – we hope you understand that these guidelines are set to help the small PPMD staff better manage and assist in numerous fundraising activities and to ensure that all PPMDaffiliated activities follow appropriate legal guidelines for nonprofits. 3. Once you have registered your event with PPMD, we can discuss what materials PPMD offers to serve your fundraising efforts. These materials range from brochures and fact sheets to balloons and buttons. PPMD will try its best to provide appropriate materials for your event. 4. If you create printed materials to use in conjunction with existing PPMD printed materials, we ask that you send copies of all such materials (invitations, tickets, programs, etc.) to the Parent Project Muscular Dystrophy development office in Fort Lee, New Jersey before you have them printed. As a growing organization, it is increasingly important for PPMD to maintain a strong identity. It is also in the best interest of the Duchenne muscular dystrophy community to use a consistent, clear voice when we communicate about DMD. By reviewing copies of your printed materials in advance of your event, we can ensure these things and offer you assistance. 8 5. Please make photocopies of checks and correspondence for your records and ours. The copies you send us will provide a cross-reference and you will have a list from which to write personal thank-you notes. 6. Please make sure all checks and donations are made out to Parent Project Muscular Dystrophy or PPMD. As you collect the checks and donations, clearly print your fundraiser name on each one. At the end of each week—or as the donations begin to build—bundle them together (again, please clearly mark them with your event name) and mail or FedEx them to the Ohio address below. By listing your event name (or donations made in honor of your family name), you will help us categorize them in our database appropriately and provide you with better and more accurate reporting. If donations are mailed directly to the PPMD office, please ask your donors to write your family name somewhere on the check so these donations are also categorized correctly. 7. Please make sure that all paperwork, accounting and checks are delivered to the Ohio office no later than 14 days following your event or solicitation. This ensures that PPMD will be able to process the check and generate a thank-you note and receipt in a timely manner. We are so grateful for your commitment to help Parent Project Muscular Dystrophy continue its work for Duchenne muscular dystrophy. Your involvement makes a difference in the lives of children around the world. Please send all checks and donations to: Parent Project Muscular Dystrophy Attn: Pat Furlong 1012 North University Blvd. Middletown, OH 45042 (800) 714-KIDS Please send all print materials to: Parent Project Muscular Dystrophy Attn: Kimberly Galberaith 158 Linwood Plaza, Suite 220 Fort Lee, NJ 07024 (201) 944-9985 9 10 Parent Project Muscular Dystrophy - Fundraising Guidelines As with any organization, it is increasingly important for all of us to work within a welldefined and developed set of guidelines. These guidelines ensure that we are serving our community the best we can, and that we follow the stringent tax codes established by the IRS with regard to fundraising activities. Parent Project Muscular Dystrophy is a tax-exempt 501(c)(3) organization. As this nonprofit status is crucial to our ability to work toward our mission, it must be held in the highest regard. Please take a moment to review the following guidelines. Guideline 1: Parent Project Muscular Dystrophy must be properly informed about all events to be carried out in its name or under its logo. Why this is necessary: As mentioned earlier, Parent Project Muscular Dystrophy has an obligation to assure both its Board of Directors and the Federal Government that its activities are compliant with those required of all 501(c)(3) nonprofit organizations. Even as a volunteer, the work you do on our behalf “counts.” For this reason, it is important that we understand what you are doing on our behalf and that we communicate about it so we can help you make it a success, offer you support, and ensure that your actions are compliant. How to do it: • Call or e-mail Kimberly Galberaith to let her know about your event. She can be reached at (201) 944-9985 or at kimberly@parentprojectmd.org. • Once we are aware of your event, Parent Project Muscular Dystrophy will add your fundraiser to our Event Calendar. We will schedule “check-in” calls to make sure you have all the materials you need and to see if there is anything else the PPMD development office can do to help. • When your event is over, please take a moment to complete the Review and Evaluation Form (provided here) and forward it to the Parent Project Muscular Dystrophy development office. Your comments and feedback will be used to help other PPMD volunteers run similar successful fundraisers in the future. Guideline 2: The organization must always be referred to as “Parent Project Muscular Dystrophy.” Why this is necessary: Our full name is long and a bit awkward, we admit. But when you use it, you raise awareness of muscular dystrophy, a frequently misunderstood disorder. Many people mistakenly refer to us as The Parent Project, yet that name actually belongs to another nonprofit organization (one that works with difficult and abusive teenagers). When you write or say “The Parent Project,” you are actually raising awareness for an entirely different organization and an entirely different cause. 11 How to do it: Before sending out any correspondence—including event invitations or letters—please double-check to be sure the correct name is used. After you write out “Parent Project Muscular Dystrophy” once, you may abbreviate it to “PPMD” thereafter. Guideline 3: Volunteers must follow the Branding Guidelines provided by Parent Project Muscular Dystrophy when acting in the organization’s name. Why this is necessary: Our Branding Guidelines in the “Getting to Know Us” brochure provide key messages about DMD and PPMD, our mission statement, approved colors, guidance regarding how to use our logo, and other useful information. It’s important to follow the Guidelines to ensure a consistent message about our organization. By following the Guidelines, you ensure that materials for your event represent the organization professionally and accurately. How to do it: • Read the “Getting to Know Us” brochure before you design invitations or produce materials for your event. If you have any questions, please call the contacts listed on the back cover of the brochure for clarification. • At least 10 days before you plan to send your materials for printing (such as invitations, tickets, programs, flyers, etc.), submit samples to the Parent Project Muscular Dystrophy Development office via fax or mail, and check in with us. We will review the materials to be sure they are compliant with our Guidelines and to offer help if you’d like it. • Before printing or mailing, please be sure you have confirmed with the Parent Project Muscular Dystrophy development office that the materials are compliant with our Branding Guidelines. This is most easily done during a “check-in” call. Guideline 4: All fundraising events carried out under the Parent Project Muscular Dystrophy name and logo must adhere to generally accepted accounting procedures for nonprofits, as employed by the organization. Why this is necessary: As we mentioned earlier, Parent Project Muscular Dystrophy has a legal responsibility to report its income accurately in a format that follows GAAP (generally accepted accounting practices) for nonprofits. By following this Guideline as set forth below, you provide the information we need to do this for your event. How to do it: Keep a Donor Log (in Excel, another program, or on paper) of all donations you receive on Parent Project Muscular Dystrophy’s behalf. Please include the name, 12 dollar amount donated, address, phone and fax numbers, e-mail address, and any other pertinent information for each person. All donations made by credit card (Visa, Master Card, American Express and Discover accepted) must also include the card number, expiration date, and signature. Please use the credit card log form we have included in this packet. Please mark all donations with the name of your event so they can be correctly credited to your event. Be sure to note all “in kind” donations (printing, services, auction items, etc.). We want to give you credit for all your hard work! As the donations arrive, collect them, bundle them together, and FedEx or mail them to the Parent Project Muscular Dystrophy executive (Ohio) office. If you receive cash donations, please go to a local bank and get a bank check (issued to Parent Project Muscular Dystrophy) for the total cash amount, then mail it to the Parent Project Muscular Dystrophy executive (Ohio) office. Once your event is complete and your donations have been received, fill out our Accounting Recap Form. This form will help you calculate exactly how much money you raised, and it will allow us to keep track of the income and expenses associated with your event. Send us a package including your donations, Donor Log, Accounting Recap Form, and any other information you’d like us to have a copy of. It’s important that we receive this package no later than 14 days after your event; this helps us get thankyou notes out to your guests quickly. Your package should go to Parent Project Muscular Dystrophy’s executive office (1012 North University Blvd., Middletown, OH 45042) once your event is complete or after any key phases. We prefer that you use a traceable mail source (registered mail, return receipt mail, UPS, FedEx, etc.) so your package can be tracked if it doesn’t arrive on time. Please do not send cash through the mail. All tax receipts must be issued from the Parent Project Muscular Dystrophy corporate office in order to comply with Federal Law. However, a personal “thank you” from the fundraising host is suggested and usually appreciated by your guests. You may want to include a sentence in your thank-you note that states, “Your official tax receipt will be issued from our corporate office” so the donor does not wonder if they will receive a tax receipt. Guideline 5: All donors’ information from fundraisers carried out under the Parent Project Muscular Dystrophy name and logo must be submitted to the organization’s executive office. Why this is necessary: If someone attends your event or contributes money or “in kind” services to your fundraiser, they are considered a Parent Project Muscular Dystrophy donor in the eyes of the law. As such, the organization has a legal obligation to provide them with a tax receipt acknowledging their contribution. For this reason, we need not only their name but the dollar amount they’ve donated, their address, and other information (see details 13 in Guideline 4). This information is stored in our database with a note that they donated via your fundraiser. The information in our database is not shared with any other individuals, organizations, or corporations; it is used and maintained solely by Parent Project Muscular Dystrophy. Individuals in our database may receive information directly from us in the future, including (but not limited to) information they have requested or information about other Parent Project Muscular Dystrophy events and activities in their area. How to do it: Maintain an accurate log of all donors’ information (as described above) and send it to Parent Project Muscular Dystrophy with all donations received. Please be sure to mark the name of your fundraiser clearly on all materials. Taking the Lead by hosting an EVENT. Fundraising events with varying themes can be planned to suit many large- and smallscale settings. With a little organization and commitment from a few caring and determined people, anything from a garage sale to a golf tournament can raise money for Parent Project Muscular Dystrophy. By hosting a PPMD fundraising event, you will: • Generate publicity for the organization. • Raise the visibility of the organization. • Raise funds for the organization. Because your event will be held on behalf of Parent Project Muscular Dystrophy, it is important to keep the message and image consistent. PPMD is extremely thankful that you are holding your event. We want to provide you with as many helpful tools as we can as you plan and host your event. It is important to remember that your event is a reflection of our organization and that you are representing PPMD – we’re in this together! Trying to think of a GREAT fundraising event? Over the years, Parent Project Muscular Dystrophy has helped plan and execute hundreds of fundraisers. To help you brainstorm for an event of your own, we have compiled a list of some of our favorite events. Bake Sale / Candy Sale Bake sales and candy sales are traditionally simple to plan, organize, and manage. They are also a great way to encourage churches and schools to get involved. We’ve even seen very large corporations raise thousands of dollars from just one company bake sale. And kids love these too (mainly because they get to eat)!! 14 Dinner Dance This type of fundraiser takes more planning and can be very time-consuming (although it is entirely up to you as to how intricate and elaborate you want the event to be). This event can range from something casual in a private home to the rental of a hall or ballroom with celebrity chefs, silent auctions, a band or DJ, and even a prominent guest speaker. Valentine’s Day Ball Why not throw a Valentine’s Day Ball (or other seasonal event such as a Snowflake Ball or Spring Fling) where the entire family is invited to attend? You can serve food and beverages, offer games and activities for the kids, even hire a DJ to encourage people to get up on the dance floor. This type of event can be casual and fun for the entire family, or you can make it an elegant affair. To help keep costs down, solicit corporate sponsorships, charge admission, and try to get the location donated. Chili for Children Cook-off This is our spin on the well-known chili cook-off. You can have booths sponsored by individuals and companies, and offer prizes for the best-decorated booth and the tastiest or spiciest chili. If chili doesn’t do it for you, you could potentially “cook off” just about anything. Try to get local organizations and companies to donate prizes and recruit a panel of judges that ideally includes a local celebrity or two to encourage people to come. Charge admission, offer activities and entertainment at the event, or have a silent auction to raise even more money. Local Talent Show Who doesn’t love a local talent show? It’s a fun event for everyone to enjoy. For the price of a ticket (donation), the audience is treated to a couple hours of entertainment and the talent gets to show off their skills. Secure a local celebrity or personality as the MC to raise attendance even more. Indoor Picnic Who says you can’t have a picnic in the middle of winter? After securing a warm place for the afternoon, decorate as if it were a warm summer day with tablecloths on the floor (no ants will bother you!). You can even offer outdoor games like horseshoes and frisbee. To keep costs down, ask participants to bring their own picnic lunch. Change Drive 15 Did you know that if you spent only paper money for one month, you could gather almost $20 in change? This one is easy and involves practically no overhead. In offices, schoolrooms, churches, or wherever, simply set up change collection stations with posters to describe the project. Offer stickers or ribbons in exchange for donations. Many school classes like this type of event because it teaches children about charity and goodwill. Ultimately, the class gets to see what the final tally is for their donation and can feel good about working together to help a great cause. In the same way, offices can get together and coordinate a change pool. Coffeehouse Evening Coffee has become so trendy these days, and it’s a great opportunity for a new breed of fundraiser. Ask your local coffeehouse to sponsor a great evening filled with coffee, desserts, and friends. It’s a relaxed, low-pressure event. Perhaps you could arrange for a local artist to perform for the evening. Charge admission for entry and offer everyone an evening to catch up with friends. Garage Sale We all have things around the house we don’t need or want. This is a great opportunity to recruit friends, family, neighbors, and church members to donate unwanted items to your garage sale. If you advertise it as a fundraiser, a local paper may be willing to run a story about your sale and Parent Project Muscular Dystrophy. It’s a great way to get rid of unwanted items while supporting a great cause. House Party We’re sure you’ve done something like this before. Just plan to host a regular old house party, but in the invitation let the participants know that the reason for the party is to raise awareness and funds for Duchenne MD. At some point during the evening, have everyone come together so you can tell your story and explain why funding is so important. It’s amazing how many people really want to help but simply don’t know what they can do. This is a great way to guide people down the right path to supporting our cause. Bowl / Dance / Read-a-thon Have you ever noticed that you can add the words “a-thon” to just about anything? Think about what kinds of events you could easily turn into an “a-thon” and then run with it. Here’s how it works: Sponsorships are pledged to participants in the “a-thon,” registration fees are collected, then the participants duke it out for prizes. Everyone wins! Balloon Time 16 The following use Parent Project Muscular Dystrophy’s heart-shaped balloons, which you can obtain by calling Kimberly at (201) 944-9985. • Set up a table at your school, church/synagogue, local grocery store, or office (be sure to get permission first). Decorate the table with blue-and-yellow tablecloths and flowers. Display and hand out copies of the “My Life With Duchenne MD” brochure and Duchenne MD fact sheets. As people approach the table, explain what Duchenne MD is, and don’t forget to mention that you are accepting donations. Give away balloons in exchange for donations. • Sell balloons, heart-shaped lollipops, candy, etc. for a set price. • Hold a “Balloon-a-thon.” Provide your local school, your child’s class, or a group of friends with sponsor sheets. Participants will ask their friends to sponsor a balloon or balloons. Each balloon should cost $1 or more. On the designated day, the participants will gather at a location with a helium tank. Each participant receives the number of balloons they have had sponsored, and all the balloons can be released at the same time. A balloon release is a great time for the press to take pictures or film for your local news. You can also make a little speech about how much you have raised and other event details (please check your local environmental laws before releasing balloons). • Organize a Balloon Raffle. Gather a range of donated prizes such as candy, toys, dinner at a restaurant, a trip…whatever you can get donated. Write each prize on a piece of paper and insert the slips of paper into balloons to be filled with helium. Each balloon is then sold for between $5 and $20…whatever you feel is appropriate. At a designated time, encourage donors to pop the balloons to reveal the prize in each. Chocolate! • Hold a Chocolate Tasting Gala. This event will require a designated “space” and a few volunteers to help coordinate the details. You might solicit local restaurants to participate: Set up booths at which each restaurant can display and hand out samples of their most fabulous chocolate creations. To make the event more festive, ask a local band to donate their talent. Sell tickets to the event and encourage local papers to list it in their “What’s Going On” sections. Guests will mingle and taste chocolate creations from the different restaurants. Consider adding a silent auction to bring in extra income. Also consider a special “kids section” with theme games (perhaps a chocolate carving contest). • Host a Hot Chocolate Party (or S’mores Party, or Hot Fudge Sundae party, etc.). This is a simple way to host a fundraiser and bring friends and family together. 17 Send out invitations to the party that include a clever line mentioning that the party is also a fundraiser (so they know to bring their checkbooks). Guests can buy mugs of hot chocolate for a set price. At some point during the evening, give an informal talk about why you are hosting the evening and appeal to everyone for donations. You may even get leads to companies or foundations that might make a larger donation. This is a great way to reach out, involve the community, and open up a “circle of awareness.” Organize a Snow Day Ask for donation from each family and offer activities such as sled rides, a snowmanbuilding contest, or snowball dodgeball. Plan a Dress-Down Day Dress-Down Day is great for schools and offices: People pay a fee to dress down one day. No school uniform…no business suits! And all in the name of a good cause. You can use the “JEANS for GENES” theme. Write Letters This is a simple and effective way to create awareness and gather donations. Write a letter to your friends explaining your involvement with Parent Project Muscular Dystrophy, and ask for their support. Enclose a “My Life With Duchenne MD” brochure and a business reply envelope – you may be amazed by the generosity that surrounds you. Potato Bake or Pancake Breakfast These kinds of fundraisers are easy to organize with only a small amount of prep time. First, ask local grocery stores to donate the necessary ingredients and supplies. You can offer food sponsors space for signage at your event in exchange for their donation. Get creative and come up with different names for different food concoctions. At a potato bake, for example, you might have a B-29 Bomber (big potato that is loaded) or a Cowboy Potato (barbeque sauce, onion and bacon). Try to make your event as much fun as possible for your participants and supporters and everyone wins. Raffles We believe in a time-honored idea: If it isn’t nailed down, you can raffle it! Although organizing raffles can be more complex and time-consuming than you might think, they can be very good fundraisers. 18 19 Taking the LEAD with corporate support Most corporations in the United States have an internal charitable giving division. Some corporations have a strict granting process where nonprofits are required to send in lengthy applications, while others require only a simple letter of request. Many corporations also have matching gift programs whereby an employee makes a donation to a nonprofit and the corporation matches that gift. Each corporation had different guidelines, processes, and organizations they support. If you’re interested in asking a corporation for support, the first thing to do is ask what sort of charitable giving programs the corporation has. After that, you will likely need to speak to a PPMD staff member so we can gather the required information and assemble the gift request. Start a corporate giving program Does your company have a program that matches employee gifts for worthy causes? Would your company support an initiative that encourages employees to have donations deducted from their paychecks each month? If you are interested in implementing either of the above scenarios, or if you have another idea to get your company involved in the fight against Duchenne muscular dystrophy, please call Kimberly Galberaith at (201) 944-9985. Corporate giving at work – IPC Cares Howard Kaplan, Chairman of the PPMD Board, created and implemented a great corporate giving program within his company, IPC. The program, called “IPC Cares,” is a simple yet creative way to get companywide support for our organization. Each pay period, one dollar is deducted from the paycheck of each employee registered in the voluntary program. These donations go directly to Parent Project Muscular Dystrophy and help with research, advocacy, and education. If you are interested in starting a similar campaign within your own company, please call Kimberly Galberaith (201) 9449985 to get more details. 20 Things You Can Do to Participate and Support Join a campaign Did you know that Parent Project Muscular Dystrophy has a number of ongoing campaigns? You can participate to whatever degree suits your level of commitment. Currently, Parent Project Muscular Dystrophy has three ongoing campaigns: 1. STIR (Striving To Impact Research) – a monthly giving campaign 2. Duchenne Muscular Dystrophy Awareness Week – “Your Heart Is a Muscle, Too.” This worldwide awareness and fundraising campaign focuses on raising awareness of DMD. 3. Canister Campaign – Making Change for Duchenne Muscular Dystrophy – an ongoing national change-collection campaign. S.T.I.R. Kimberly Galberaith leads a campaign called S.T.I.R. (Striving To Impact Research). Parent Project Muscular Dystrophy families and supporters are encouraged to sign up for this monthly giving campaign by filling out a S.T.I.R. registration form with your bank or credit card information. Each month, Parent Project Muscular Dystrophy automatically deducts or charges the requested amount. The automatic debit system is very safe and secure. Deductions are made on the 15th of every month and are handled by the Parent Project Muscular Dystrophy staff. By joining this campaign, you provide steady funds that further our Duchenne muscular dystrophy efforts. It is also a big help if you can sign up friends or family members who want to support us. STIR is one of the easiest ways to get involved—and stay involved—with very little effort. Monthly donations are critical to helping PPMD move forward in the fight against DMD. Awareness Week PPMD’s DMD Awareness Week happens each year during the week of Valentine’s Day. We encourage families and friends around the world to get involved to help us raise awareness of (and funds for) Duchenne muscular dystrophy. This year’s Awareness Week 2004, themed “Your Heart Is A Muscle, Too!” is a great time to plan a fundraiser, spearhead a letter-writing campaign, or generate press surrounding issues related to DMD. Your participation in this week is encouraged and very much appreciated. Canister Campaign One of our long-time supporters, Dan Lilley, spearheads a canister campaign in which canisters are placed on the front counters of stores to solicit donations from patrons. We accept donations in any amount, and loose change adds up quickly. If you would like to 21 place canisters in stores near you, please call Kimberly at (201) 944-9985 and she will connect you with Dan. Attend an Event There’s nothing better than having a good time in support of a great cause. Events range from golf tournaments to bowl-a-thons to Tupperware parties. We encourage you to check out our Calendar of Events on our website: www.parentprojectmd.org/news/calendar/us_events.html to see if there’s an event coming up that sparks your interest. Whether you volunteer to help out at the event or just attend, these events are a really great way to support PPMD. Donate Goods and Services Does your company specialize in printing? Do you have overstock items that could be used by others at fundraisers? Does your company print t-shirts, tote bags, and other promotional items? Wouldn’t it feel great to donate your press and overstock items to a worthy cause like Parent Project Muscular Dystrophy? We need people like you to help us create and execute exciting and inventive ways to support PPMD. Please contact us at 1-800-714-KIDS to discuss the particulars of donating goods and services. Donations Maybe it doesn’t seem glamorous, but making a donation and asking others to do the same is a very important part of supporting PPMD’s efforts. Most of the money we raise comes from people just like you. Of course, any amount of money you can give is greatly appreciated. No gift is too small or too large. Your help and support are always appreciated. Buy Merchandise Do you like wearing your heart on your sleeve? We hope you do, because we’ve got lots of great merchandise you can buy to show your support of Parent Project Muscular Dystrophy. T-shirts, tote bags, ribbons, pins and more are sold, with the proceeds going directly back into the organization. Wear it with pride!! Check out currently available merchandise by visiting www.parentprojectmd.org/helping/merchandise.html, then call Kimberly Galberaith at (201) 944-9985 to place your order. Securities Do you have stocks, bonds or other funds you would like to donate to a worthy cause? Although giving securities is often overlooked as a fundraising option, it’s a great way to show your support for Parent Project Muscular Dystrophy. We gladly accept all 22 donations from individuals and corporations, and we put all dividends toward research, education, and advocacy. Please call Kimberly Galberaith at (201) 944-9985 for more information. 23 Generate Press The effective use of free media opportunities gives us the chance to let the world know about Duchenne muscular dystrophy and addresses the importance of raising funds for research. We have put together some tips on proven methods for generating media interest as well as some suggestions on how best to convey messages about Parent Project Muscular Dystrophy and Duchenne muscular dystrophy to the appropriate people. To make it easier for you, this binder includes a sample press release and a sample “letter to the editor” about Duchenne muscular dystrophy. In our experience, the best way to start is to localize these materials with your personal and specific event information and then submit them to your press contacts. We are sensitive to the fact that discussing DMD can bring up delicate issues within your family. With this in mind, please know that Parent Project Muscular Dystrophy will understand if you would like to edit parts of these press templates to keep your family comfortable. Parent Project Muscular Dystrophy realizes that sending out press items can be hard, but we also know how important it is to bring the face of this disorder into the public eye. 24 Tips for Pitching the Media and Interviews We realize that sometimes it’s tough to talk to the press, but remember: When you talk to the media about DMD, you are the expert. Don’t worry about being asked questions you feel you can’t answer – just be honest. Reporters want to know your story and will be interested in the impact Duchenne muscular dystrophy has had on your son and your family. Following are some guidelines for speaking with the media. These will prepare you for the interview and can be helpful in sticky situations. 1) Be prepared. • Be familiar with the publication and its audience. • Know the reason for and the topic of the interview. Make sure their story agenda is something you want to be associated with or quoted on. • Have materials and backup information in front of you for reference during the interview. 2) Decide your objectives and key messages in advance. • Make your key points as simply and as often as possible. • Listen to the interviewer’s questions, respond briefly, and then steer to one of your key points. • Have interesting examples or anecdotes to back up your key points. Tell your personal story. • A reporter may re-ask a question in a slightly different way to get you to answer in simpler terms or to get more information. Just remember to stick to your key points. 3) Be truthful and direct. If you don’t know the answer, admit it and offer to get the information for the reporter as soon as possible. Be sure to follow up. 4) Be patient, concise, and calm. A successful interview is often a conversation rather than an inquisition. 5) Be confident and relaxed. Remember, you are the expert! 25 6) Be sure you understand the question before you answer. If you’re not sure what the reporter is asking, say so. It’s OK to ask a reporter or editor to back up or rephrase a question. 7) If necessary, take the time to educate the reporter and the audience, but don’t do it condescendingly. Keep it short, simple, and friendly. If a reporter comes up with some fact or statistic that is incorrect, gently say, “Actually, what happened was (this) and we did (this).” 8) If it’s an in-person interview, be aware of the body language you project. 9) Beware “off the record” – it doesn’t really exist. Anything you say may be quoted. 10) Do not say “no comment.” • Give a reason if you can’t discuss certain topics or issues. • There are many ways to give a “non-answer.” You can redirect the conversation by saying, “I can’t discuss that, but I can tell you that our program is successful because…” 11) Don’t be afraid to show emotion. DMD is a very emotional issue for you and your family. 12) Speak in the affirmative. Say what something is, not what it is not. 13) Deal with reality. Don’t discuss “what ifs.” They can get you into trouble. 14) Beware of the long pause. When you’re finished answering a question, don’t worry if the reporter just sits there. Don’t feel that you have to keep talking. People often speak nervously to fill the silence and say more than they should. When you’ve made your point, stop speaking. 26 15) Beware of buzzwords. Listen carefully, as news reporters can exaggerate. Words like “disaster,” “scam,” “ripoff,” “scandalous,” and “outrage” are used often. If the situation you are discussing is not extreme, redefine it. Replace the reporter’s words rather than reusing them. 16) You have control over what you say in an interview. The editor has ultimate control over what finally appears in print or on the air. 27 Press Releases Please use the Event Press Release for all types and sizes of events, whether letterwriting campaigns, change drives, bake sales, or dinner dances. Every event counts, and we want as many people as possible to know about it. After you localize your press release by adding your name and contact number, your son’s name, etc., please send it via fax or e-mail to reporters you know or that you have worked with in the past. You should also call all the media outlets (newspapers, local television channels, local magazines) in your community and ask them whose attention you should send the release. Also get the reporter’s fax number and e-mail address. Be mindful of publications’ deadlines. In some instances, they need to be notified six weeks before the event to include it in the calendar listing. The following types of reporters are most likely to be interested in our story: Daily newspapers – Features editor, health reporter, calendar reporter, metro desk Weekly newspapers – Features editor, health reporter, calendar reporter, metro desk Television stations – Assignment desk, futures desk Radio news stations – News desks After sending a press release to media outlets, it is best to follow up with a phone call to “pitch” the release. To “pitch” the reporter, call or e-mail them to personally tell them about the event and explain why it’s important. It helps to give information beyond the “who, what, when, and where,” such as why the event will appeal to the publication’s readers. By having a conversation about your event, you’ll stand out in the reporter’s mind and perhaps begin to build a relationship, thus raising his or her awareness of Duchenne muscular dystrophy and Parent Project Muscular Dystrophy. Letter to the Editor The “letter to the editor” is a press piece that can spawn a human-interest story in your local media. You may wish to add more personal tidbits to the letter. You may also wish to send a picture of your son or your family so the editors can put a face with your name. Again, be sure to follow up with a phone call after you send the letter to the editor. The letter should be mailed or e-mailed to all daily and weekly newspapers in your community about two weeks before your event. This will give the media outlets time to place the letter in their publication and also allow them time to get in touch with you to schedule a larger-scale interview if need be. Press Placement Parent Project Muscular Dystrophy would appreciate receiving a copy of all press placements you receive so we can keep accurate and up-to-date media records. Final Outcome 28 Please do not be discouraged if your press releases and story ideas are not placed. For whatever reason, many press releases (articles, photos, etc.) slip by the wayside and never make it to print. Your efforts are still worth it, and we appreciate all the time you’ve spent. If you have any questions, please call Kimberly Galberaith at (201) 944-9985. 29 TEMPLATE FOR AN EVENT PRESS RELEASE For Immediate Release (Date) Contact: (Your name) (Your phone number) (name of hometown) Family Hosts Bake Sale to Raise Awareness for Duchenne Muscular Dystrophy (type of Event) to Raise Money for Research for the Most Common Lethal Genetic Childhood Disorder (Location, Date, Time) (name of hometown) – (Draft a sentence with your son’s age and name, such as, “Fiveyear-old Jonnie Smith loves to play baseball, but he can’t run to first base as fast as other kids his age.”) He has been diagnosed with Duchenne muscular dystrophy (DMD), a progressive muscle disorder that causes loss of muscle function and independence. Each year, approximately 20,000 children worldwide are born with DMD. This devastating disorder is the reason why his mother, (your name), decided to plan a (type of event) in (city). On (date, time and place of fundraiser), (your name) will hold a (type of fundraiser, e.g., dance, run, silent auction) to raise awareness of DMD and raise money to find better treatments and ultimately a cure for this prevalent—yet relatively unknown—disorder. Many parents do not recognize early signs of DMD because their children’s movements simply appear slower or a bit more labored than those of other children. Boys are usually diagnosed by the age of 7. Typically, those diagnosed with DMD lose their ability to walk between the ages of 10 and 14 and lose most of their upper body strength— 30 including the ability to move their arms—by their late teens. Typically, those diagnosed with DMD need respiratory support at night during their teenage years. Over time, their respiratory systems weaken and they require more constant support. Medical data suggest that those diagnosed with DMD typically survive only into their 20s. (Draft a similar quote) “We want everyone to know more about Duchenne muscular dystrophy and how it affects people in our own neighborhoods and communities,” said (your name). “Our (event) is a fun way to raise awareness. However, the purpose of the event is very serious, because much more research is needed to fight this disorder.” (Your name) is a supporter of Parent Project Muscular Dystrophy, a national nonprofit organization founded in 1994 by parents and grandparents whose children were diagnosed with Duchenne Muscular Dystrophy. PPMD is the largest grassroots organization in the U.S. that is entirely focused on DMD. It invests in research, education, advocacy and other issues that directly influence the well-being of those affected by DMD. For more information, visit www.parentprojectmd.org or call 1-800714-KIDS. MEDIA NOTE: (Your family’s name), Parent Project Muscular Dystrophy staff, and experts on Duchenne muscular dystrophy are available for interviews. Call (your name) at (your phone number) for more information. 31 TEMPLATE FOR A LETER TO THE EDITOR Date Letters to the Editor Name of Hometown Newspaper Address Dear Editor: Duchenne muscular dystrophy affects one in 3,500 boys worldwide. Yet despite its prevalence, not much is known in our own neighborhoods and communities about this devastating disorder. Our son (your son’s name) was diagnosed with Duchenne muscular dystrophy in (year). Since that time, (insert information here about how DMD has affected your son’s movements). DMD is a progressive muscle disorder that causes loss of muscle function and independence. As (son’s name) gets older, his muscles will begin to weaken and deteriorate. This pattern will continue, ultimately taking his ability to walk and most of his upper body strength, including the ability to move his arms. Since the heart is a muscle too, those diagnosed with DMD typically need respiratory support at night during their teenage years and more constant support as time goes on. Imagine the difficulty of taking away your son’s bicycle and replacing it with a wheelchair. The simplest tasks, like holding a fork, turning over in bed, and giving us a hug, become very difficult. We can’t allow ourselves to lose hope that our son will have better future than predicted. More research is needed for better treatments and ultimately a cure. This means that more funds are needed to conduct the research. More awareness is also needed in our communities for earlier diagnosis, which will help identify problems sooner and determine the appropriate treatments. It is a mistake to think that this disorder cannot affect your family simply because you have no genetic history of it. Duchenne muscular dystrophy knows no boundaries and 32 crosses into all cultures and races. Approximately 35% of all DMD cases are the result of random, spontaneous genetic mutation that can occur during any pregnancy regardless of family history. We hope that your readers will take a moment to learn more about Duchenne muscular dystrophy. Please visit www.ParentProjectMD.org or call 1-800-714-KIDS. Parent Project Muscular Dystrophy is a national nonprofit organization founded and managed by parents and grandparents whose children have been diagnosed with Duchenne muscular dystrophy. Parent Project Muscular Dystrophy is dedicated to finding better treatments— and hopefully one day a cure—for DMD. Please help us in our fight against this devastating disorder. Sincerely, (Your name) 33 Templates and Tools The following templates and tools are designed to help make your event run smoothly. They are suggested formats that have worked in the past for other PPMD family-led events. Also, by using the provided templates, you help the PPMD staff process your event quickly and efficiently because we know that the information being gathered is consistent in its format. Please help us stay on top of your event by filling these out with as much information as you can. If you find you need another template that we have not included, please call Kimberly at (201) 944-9985 and we will do our best to get you the information you need. On the other hand, if you create a template or tool that works well for your event, please share it with us so we can help other families run their fundraising events more efficiently. 34 Parent Project Muscular Dystrophy Event Registration Form Please help us keep track of all Parent Project Muscular Dystrophy fundraising activities around the country by filling in the information below and sending it back to us at: Parent Project Muscular Dystrophy,158 Linwood Plaza, Ste. 220, Fort Lee, NJ 07024 Phone: (201) 944-9985 Fax: (201) 944-9987 Name of family: Type or name of event: Contact person for the event: Contact phone number: E-mail: Date of event: Time: Location of event: Additional information about your event (e.g., ticket price, guest performers, special instructions, etc.): 35 PPMD Credit Card Log Sheet The Credit Card Log Sheet will make it easier for you to capture all necessary information pertaining to credit card donations and help us process them. (Please make copies if you need additional sheets). Name: Address: City, State Zip: Phone (home): E-mail: Phone (work): Type of Card: Card Number: Expiration Date: Amount Charged: Event: Signature: Recorded by: Name: Address: City, State Zip: Phone (home): E-mail: Phone (work): Type of Card: Card Number: Expiration Date: Amount Charged: Event: Signature: Recorded by: 36 Donor Log You can easily set up your own donor log. It should be a simple spreadsheet that can be added to, updated, and used in a mail merge. This log should assist you in keeping track of who attends your event and what they donate. After your event, the log will help you send thank-you notes and will help us easily transfer the information into our database and accounting systems. Here is a very simple and small sample of a donor log. Name Address City State Becky Smith 1111 Elm Street Anytown FL Stan Jones 2222 Main St Anytown FL Zip Phone 555-55599999 5555 555-55599999 5555 $ Donation $4,000 $5,000 Event Accounting Form The Event Accounting Form should be filled out and mailed along with all of your supporting accounting materials, donations, and checks. Parent Project Muscular Dystrophy needs this from you as soon as possible following your event and no later than 14 days after your event. As required by law, Parent Project Muscular Dystrophy sends out thank-you letters and tax donation receipts as soon as we have this information. A good rule of thumb is “thank before you bank,” so getting your information to PPMD in a timely fashion is critical. 37 38 Event Accounting Form EVENT: LOCATION: EVENT COORDINATOR: DATE OF EVENT: ___________ DATE OF ACCOUNTING REPORT: ___________ Income: Individual Donations $____________________________ Corporate Sponsors $____________________________ Auction/Silent Auction $____________________________ Raffle/50-50 $____________________________ Ticket Sales $____________________________ Merchandise Sales $____________________________ Program Ads/Sponsorship $____________________________ Gift Matching $____________________________ Other _________________ $____________________________ Other _________________ $____________________________ Other _________________ $____________________________ Total Gross $____________________________ 39 Expenses: Event Location/Venue: $____________________________ Decorations: $____________________________ Food/Catering: $____________________________ Entertainment: $____________________________ Audiovisual Equipment: $____________________________ Invitations/Program Printing: $____________________________ Advertising: $____________________________ Security/Staffing: $____________________________ Awards/Gifts: $____________________________ Postage/Copies: $____________________________ Other: $____________________________ Other: $____________________________ Total Expenses: ($____________________________) NET PROFIT FROM FUNDRAISER: $_____________________________ (Please list any additional details on the back of this page.) 40 Event Review and Evaluation Form The Review and Evaluation Form should be filled out once your event has passed. It is helpful for Parent Project Muscular Dystrophy to know the details of your events, what worked and what didn’t, so we can better assist others in future fundraising efforts. We would appreciate you sending this form to us at the same time you mail the Events Accounting Form. How many individuals attended this event? ____________________________________ What was the general tone of the event? (e.g., exciting, fun for all, serious, elegant, etc.) How many volunteers worked with you? How many committee members did you have? How often did you hold committee meetings? How far in advance did you begin planning this event? What was the most difficult aspect of your event? Explain why. Did you do any PR around your event? If so, what type(s)? 41 Did you utilize tools such as Duchenne MD fact sheets or Parent Project Muscular Dystrophy brochures and literature at your event? If so, which ones? Did you meet or exceed your budget? If exceed, why? Would you host this type of event again? Why or why not? If you could go back and host your event again, would you do anything differently? What could Parent Project Muscular Dystrophy have done or supplied to help your event run more smoothly? 42 Pledge Sheet Many fundraising events—such as runs, walks, and other “a-thon” events—rely on participation through individual pledges. The following pledge form template can be used for most events. You are welcome to add any additional information you need. Participant Name: __________________________________________________ Address: ___________________________________________________________ City: ______________________________ State: ________ Zip: ___________ Phone (home) _______________________(other)_________________________ Running for ______________________ and everyone affected by DMD & BMD. Total Pledged Amount: $_______________________ Total Matching Gift (optional): $_______________________ Total Collected: $_______________________ Please list all pledges in the area provided. Should you require additional space, please photocopy the pledge sheet or call 1-800-714-KIDS for assistance. All pledges should be mailed and made payable to: Parent Project Muscular Dystrophy 1012 North University Blvd. Middletown, OH 45042 1-800-714-5437 Thank you for participating on behalf of all those touched by Duchenne muscular dystrophy. Your kindness and generosity are greatly appreciated. 43 Pledge Form (continued) Pledges per Mile or Flat Donation Sponsor’s Name & Address SAMPLE: John Doe, 1245 Main St., Bronx, NY 10034 $25 1. My Own Pledge 2. 3. 4. 5. 6. 7. 8. 9. 10. TOTALS: GRAND TOTAL: 44 Corporate Matching Gifts Total $25 $50 45 Auction Item Request Sheet When hosting an event such as a dinner or tournament, a silent or live auction is often involved. In preparation for the auction, event coordinators and committee members disperse into the community in search of auction items. Local businesses, shops, and other vendors are approached to donate items that can be used in your auction. To help make your request easier, the following template letter is suggested. This letter was originally created by a PPMD family for their auction (which managed to secure over 400 auction items!). You will need to add your own event and contact information. SAMPLE AUCTION ITEM REQUEST LETTER Date Parent Project Muscular Dystrophy (PPMD) will hold a (event type) and auction to support muscular dystrophy research and education. In (month/year), our (age)-year-old son (son’s name) was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is the most common inherited, lethal disorder in children; it affects one in every 3,500 boys born worldwide. DMD is characterized by progressive muscle weakness that results in loss of muscle function. To date, there is no treatment or cure. PPMD is a nonprofit organization founded in 1994 by parents and grandparents of children with muscular dystrophy. Our mission is to fund research and raise awareness to change the course of lives affected by this devastating disease. PPMD is nationally and internationally recognized as a leader in advocating for muscular dystrophy. For more information on PPMD, please visit our website at www.parentprojectmd.org. Our 2003 Auction will be held at (venue), (address, city) on (day, date). We expect over (number) people to be in attendance and bidding on items in our auction. We are asking you for a donation to help support our fight against Muscular Dystrophy. We invite you to participate in one or more of the following ways: ♦ Donating items (goods or services) for auction ♦ Making a cash donation to be used toward the purchase of needed items for the dinner or auction ♦ Attending the dinner auction Please send your donations to Parent Project Muscular Dystrophy Auction, (add your address here). We would like to receive all gifts by (add the date here). We would be happy to arrange for the pickup of any item. Also, keep in mind that your gift is tax deductible. You will receive a letter from PPMD to be used for tax purposes. 46 Feel free to call us with any questions at (add phone number here). We appreciate your support of PPMD and your compassion for families affected by muscular dystrophy. Together, we can both benefit. Your company will receive recognition at the auction and PPMD will be that much closer to a cure. Thank you for considering our request. Sincerely, Auction Item Form Date: ___________ Item: _______________________________________________________________________ Description: _____________________________________________________________ _______________________________________________________________________ Value: $________________________ Gift Certificates: $________________________ Restrictions, Conditions, Information: _________________________________________ ________________________________________________________________________ ________________________________________________________________________ PPMD needs to pick up (check box if yes) Where:_______________________ When:______________________ Other Arrangements: ___________________________________________________________ Person to contact for additional information (if other than donor): Name: _______________________________ Phone: ________________________ Donor: ______________________________ Phone: ________________________ Address: _______________________________________ City:____________________________ State:___________ Zip:_________________ Signature:_______________________________________________________________ Please make a copy and send original, along with item for auction, to: PPMD Auction (Your address here) 47 We would like to receive all gifts by (Month/Day/Year) THANK YOU FOR YOUR SUPPORT OF PARENT PROJECT MUSCULAR DYSTROPHY 48 Silent Auction Bid Sheet The Silent Auction Bid Sheet is designed to help you manage your silent auction on the day of the event. Every item you auction off should have its own bid sheet. Generally, it is a good idea to have these printed in triplicate so every form has a three-color system. People will fill in their bids, then when the auction table is closed, you take the top two copies to the checkout for processing (one of which will be given to the winner of the piece) while the third copy remains at the auction table with the winning bid circled. This way people can check to see if they won the item and if not, who did. Item: ____________________________________Item Number:___________________ Description of Item: ______________________________________________________ Donated by: ____________________________________________________________ Value: $____________ Starting Bid: $___________ Increase by increments of : $______ # Name Bid $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 49 Silent Auction Summary The Silent Auction Summary is a template to help you organize the closing and the postauction cleanup. This template includes the details that will prove useful as you wrap up your event. EVENT: _____________________________ DATE: __________ Item / Item # Value $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ Min. Bid $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ Closing Bid $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ $ 50 Paid FollowUp Needed? Item Taken or Date Picked Up/Mailed? Parent Project Muscular Dystrophy Ongoing Campaign Information 51 Parent Project Muscular Dystrophy 2004 Duchenne Muscular Dystrophy Awareness Week New York City. Katmandu, Nepal. St. Louis, Missouri. Melbourne, Australia. London, England. What do boys in these cities and in every corner of the globe have in common? They share a 1 in 3,500 chance of being born with Duchenne muscular dystrophy (DMD). DMD is the most common lethal genetic disorder that affects children worldwide. It impacts all races, cultures, and socioeconomic classes. Duchenne muscular dystrophy and its less severe form, Becker muscular dystrophy, are progressive muscle disorders. Boys with DMD are typically diagnosed before the age of 5 and lose the ability to walk when they are between 10 and 14 years old. By their late teens, those diagnosed with DMD have lost most of their upper body strength, including the ability to move their arms. The simplest of tasks, such as holding a fork or turning over in bed, become very difficult. To date, there is no treatment or cure for DMD. Why is it that so few people have heard of Duchenne muscular dystrophy? Perhaps because DMD is so difficult for affected families to discuss. Or maybe it’s because there has never been an opportunity for those affected to come together and be heard all at once. With this in mind, Parent Project Muscular Dystrophy introduced the first annual Duchenne Muscular Dystrophy Awareness Week in 2001. For the first time ever, the Awareness Week gave parents, family members and friends around the world an opportunity to unite and give a voice to those diagnosed with DMD. Three years later, Parent Project Muscular Dystrophy is proud to announce the 4th Annual Duchenne Muscular Dystrophy Awareness Week, February 8-14, 2004. This 52 week represents a coming together of the DMD community and a concentrated effort to raise awareness and funding for all those fighting the battle of Duchenne muscular dystrophy. Our Awareness Week purposely falls during the week of Valentine’s Day because we need to remind the world that YOUR HEART IS A MUSCLE, TOO! Over the last two years, PPMD has watched our Awareness Week efforts grow strong, with families in 28 states and six countries participating. We are hopeful that participation this year will expand to include an even larger community active in fighting DMD. We must give a voice to those affected by Duchenne muscular dystrophy, a disorder that has long been misunderstood and underfunded. We must improve standards of care, monitor the latest resources for research and treatment, and share information with those who need it most. We must impact this generation touched by Duchenne and Becker muscular dystrophy. But we can’t do it alone. We need your help now more than ever. We must continue to forge ahead with research. If we don’t work together to erase DMD, who will? Please join us to make Awareness Week 2004 even bigger and brighter than last year. Please join us in reminding the world this Valentine’s Day that Your HEART Is a Muscle, Too. 53 35+ Easy Things to Do for PPMD’s 3rd Annual DMD Awareness Week Individual Actions • Participate in our Awareness Week letter-writing campaign. Download or request template letters, add your personal information, and tell your story. Then mail the letters to friends and family. • Hang PPMD posters in your office, workspace, or school. • Put a sign up in your front yard – use one of the PPMD posters or make your own Awareness Week poster and mount it on plywood in your yard. • Wear a PPMD T-shirt or awareness ribbon. • Wear a PPMD HOPE bracelet, available on our website at http://www.parentprojectmd.org/helping/merchandise.html • Have one-on-one conversations with 10 friends about Awareness Week and ask them to talk to 10 of their friends on your behalf. • Make a donation to PPMD in honor of Awareness Week. • Include information about DMD with your Valentine’s Day Cards. Community and Neighborhood Events • Ask local businesses, libraries and others to hang up PPMD posters and collect donations in honor of Awareness Week. • Ask local grocery stores, banks and other businesses to be part of our “big heart hang-up” and proudly display the new PPMD donation pledge hearts in their store. For each individual who donates to PPMD’s Awareness Week, the store will receive another heart to hang. • Plan an event—a dinner, a dance, a raffle—any event. Refer to our Volunteer Leadership Toolkit for additional ideas. • Ask to speak about DMD at your local Rotary and other clubs. Refer to our key message points in the “Getting to Know Us” brochure. Be sure to ask if you are allowed to distribute additional literature and accept donations. • Set up a table and distribute flyers. Hand out balloons, pins and other DMD information at a local store, ice rink, restaurant, or other high-traffic area. • Contact local celebrities and ask them to participate at your Awareness Week event. Ask them to wear a PPMD T-shirt or awareness ribbon. • Ask a local restaurant to place PPMD literature at every place setting and ask them to donate a percentage of sales to PPMD in honor of DMD Awareness Week. • Add an auction or silent auction to your DMD Awareness Week event to help raise more funds and get other local vendors involved. • Hold signs up at a roadside location and have volunteers collect funds at intersections. • Ask your family and friends to participate in a letter-writing campaign. Offer PPMD template letters and PPMD return envelopes to help facilitate this. • Ask a local artist to create a piece of art for DMD Awareness Week and donate it for auction. 54 • Hold a community garage sale. Things to do at your workplace • Organize a “dress-down day” where co-workers make donations for the privilege of dressing down. You might call it “Jeans for Genes.” • Set up a table and distribute DMD information and literature. Collect donations and proudly display the PPMD Pledge Hearts. • Ask your company to make a donation in honor of PPMD. Activities with your community of faith • Ask your pastor/priest/rabbi to speak about DMD and the work PPMD does. • Plan a potluck dinner event. Focus on fun and fellowship and talk about the DMD community’s efforts. Activities for your School • Organize a Valentine’s Day candy sale. • Ask teachers to discuss topics of inclusion throughout the week, and encourage them to get the class involved in inclusion activities. Contact Kimberly Galberaith at (201) 944-9985 for suggested activities. • Organize a “dress-down day” or theme dress day at your school. Send DMD literature home to families as part of the information packet regarding the dressdown day. • Set up a change collection station called “Making Change for Duchenne” at your school. Proudly post a sign that shows how much the change adds up to so students can feel proud of working together toward a goal. Reaching the Media • Contact local TV and newspaper reporters and ask them to cover your DMD Awareness Week event. • Send press releases to local media contacts – use the PPMD Press Release and Letter to the Editor templates. • Send a page of photos with pictures of your son and family along with your media materials in order to add a “face” to the story. • Call local radio talk-show hosts and request to be on the air to talk about DMD and DMD Awareness Week. • Take pictures of your events and activities to send to PPMD and to use in followup media stories. • Use existing contacts with TV, radio, magazines and newspapers to promote DMD Awareness Week. Trying to think of a GREAT fundraising event? How about… 55 Bake or Candy Sales Dinner Dance Golf Tournament Dine Out for Duchenne Valentine’s Day Ball Chili for Children Cook-off Indoor Picnic Change Drive Coffeehouse Evening Garage Sale House Party Bowl /Dance /Read-a-thon (everything and anything can be an “a-thon”!) Balloon Time (use PPMD balloons that you can get from Kimberly) • Set up a table at your school, church/synagogue, local grocery store, or office. • Sell balloons, heart-shaped lollipops, candy, etc. for a set price. • Hold a Balloon-a-thon. • Organize a Balloon Raffle. Chocolate • Hold a Chocolate Tasting Gala. • Host a Hot Chocolate, S’mores, or Hot Fudge Sundae Party. Organize a Snow Day Plan a Dress-Down Day Write Letters Potato Bake or Pancake Breakfast Raffle Art Auction E-bay Sale 56 Your HEART Is a Muscle, Too! Every year, Parent Project Muscular Dystrophy strives to make our annual Duchenne Muscular Dystrophy Awareness Week bigger and better than the year before. We also try to make it as easy as possible for families to get involved. This year, PPMD has created the: DMD Donation Heart It’s a simple way for us to remind the world that Your HEART Is a Muscle, Too! Help us create awareness and raise funds to fight the battle against DMD for all those touched by this devastating disorder. Below are some suggestions and guidelines on how to use the DMD Donation Heart. PPMD hopes that this Valentine’s Day, people will open their hearts to say not only “I love you,” but also “I care.” DMD Donation Heart Ideas: • Set up an awareness and donation station at your office, school, or place of worship. You can collect donations and hang a donation heart on the wall for each person who participates. Then watch as your wall of hearts grows and grows! Remember to decorate your table and offer DMD literature to those who participate. Lastly, remember to take a picture of your wall of hearts to share with the media and your office, school, or place of worship. A picture really is worth a thousand words, and sometimes it really helps to include one when saying “thank you.” • Ask your local bank, grocery store, five and dime, or any business to collect donations and hang up the hearts. This is a great way to get community businesses involved. PPMD can provide a daily log sheet for donation totals so the accounting can be handled easily. • If local stores and business won’t hang the hearts inside, ask them if you can set up a table outside. You can skirt your table and put large posterboards on easels. Use this area to proudly display your DMD Donation Hearts. • Ask your local youth groups, Boy and Girl Scout troupes, Lion’s Club, Knights of Columbus and other social organizations to get involved. They can go door to door, stand at intersections, etc. and collect donations as they hand out DMD literature. For every donation they collect, ask them to put a name on a donation heart. If you prearrange a place where the hearts can be displayed (such as the entrance of the local library or at the town hall), you can tell everyone who donates to visit the wall on Valentine’s Day to see the “wall of hearts.” This is one more opportunity to educate people about DMD. You can offer Valentine’s 57 Day candy and DMD literature to broaden the circle of awareness. This is also a nice opportunity for the local media to come by and see the support your community has put forth. There are many other ideas beyond the ones mentioned above for using the DMD Donation Hearts. Please feel free to share your ideas with everyone on our fundraising message board thread at http://www.parentprojectmd.org/cgi-bin/yabb/YaBB.cgi If you have questions about the donation hearts or if you are ready to start handing them out, please email me at Kimberly@parentprojectmd.org and I’ll send them to you. Warm regards, Kimberly Galberaith (201) 944-9985 58 DMD Donation Heart - FAQs Q: How much should we ask for each heart? A: The answer to this question is simple: whatever you think is reasonable for the location you are soliciting. For instance, if you have a donation table in a school or if you have volunteers at locations in a downtown area, you won’t necessarily ask for a set dollar amount. Instead, any donation should earn a heart. Many people will just reach into their pockets or purses and give whatever they have. Sometimes leaving the dollar amount up to the donor is a way to encourage people to be as generous as they can afford to be. On the other hand, if you have partnered with a bank, store, or other establishment, or if you set up a table at your office, you may want to ask for a set amount such as $1, $3, or even $5 depending on the location and the individuals who will pass by. Q: When can I get my hearts? A: DMD Donation Hearts will be available in January 2004. Just e-mail me at Kimberly@parentprojectmd.org with your name, address and the estimated number of hearts you will need. I will ship them out to you as soon as possible. Q: When do I start my DMD Donation Heart campaign? A: We suggest that you utilize the entire Awareness Week (February 8-14, 2004). If you have to pick just one or two days to celebrate Awareness Week, it might be best to choose the 13th and 14th this year, since these days are at the end of the week and include Valentine’s Day. Q: Can you give me some facts on PPMD’s DMD Awareness Week? A: Parent Project Muscular Dystrophy began DMD Awareness Week in 2001 to create greater awareness and funding for Duchenne muscular dystrophy. Each year, DMD Awareness Week coincides with Valentine’s Day so we can remind the world, “Your HEART Is a Muscle, Too!” This year marks the 4th Annual DMD Awareness Week. Over the past three years, participants in over 28 states and six countries and have generated over $150,000 for DMD. 59 Letter-Writing Campaign One of the easiest and most profitable fundraisers you can organize is a letter-writing campaign. How many times has your circle of family and friends asked what they could do to help? Often, there isn’t really a good answer. But with a letter-writing campaign, you can share a bit of your story and ask them to help by supporting a particular project you are leading. There is no right or wrong way to run a letter-writing campaign. The letter is strictly up to you – who you send it to, how much personal information you give, and your approach are all up to you. By simply broadening the awareness of DMD and getting the word out about PPMD’s Duchenne Muscular Dystrophy Awareness Week, we can create momentum in the DMD community. We have included a sample letter that one family used in their very successful letter writing campaign. Their son was newly diagnosed when this letter went out. Since every family’s situation and dynamic is different, please write your letter to tell your story. This template is designed to simply give you an example of a letter that was very informative, personal, and successful in creating awareness and funding. As you develop your own letter, keep in mind that the goal is to increase the awareness of DMD and to reach out into the community for support. If you would like us to send you literature on PPMD or return envelopes to include in your letters, please notify Kimberly at Kimberly@parentprojectmd.org or call her at (201)944-9985. 60 SAMPLE LETTER FOR LETTER WRITING CAMPAIGN Date Name Address City, State Zip Dear Family and Friends, Happy Valentine’s Day! We hope this note finds you all well. We wish we could be contacting you personally, but we are writing this letter to you today to tell you about a very serious health condition that has affected our family and to ask for your help. Earlier this year (or a phrase such as this), our son (son’s name) was diagnosed with Duchenne Muscular Dystrophy (DMD). While this diagnosis came to us as a complete shock, we have made it our mission to fight for (son’s name) life. We are committed to finding treatments for DMD and to seek the best possible care and therapies available. Duchenne Muscular Dystrophy is not contagious, and mainly affects boys. It is characterized by progressive muscle weakness that results in the eventual loss of muscle function. Boys lose the ability to walk in their early teens and the disorder usually results in death by the age of 20. This disorder affects one in 3,500 boys worldwide, and currently there is little treatment and no chance of remission. Quite frankly there is not enough money being spent on research for a cure. As you may know, other charitable organizations are out there raising money for the many forms of muscular dystrophy however, the bulk of money raised by other organizations goes to fund overhead, camps and treatment centers. Research is the key to finding better treatments, care options and eventually a cure. With this in mind, we were grateful to find an organization called Parent Project Muscular Dystrophy who focuses solely on research and other programs that support DMD research. This organization compliments the role that other charitable organizations play. In 1994 a group of parents formed Parent Project Muscular Dystrophy (PPMD). We have joined forces with this organization and hope you will help us in our efforts. PPMD is a nationally recognized, non-profit group that exists solely to raise funds to find a treatment or cure. Last year 82% of all funds raised went directly to research and education. PPMD has formed alliances with leading research centers and hospitals around the country. The scientists there have demonstrated very promising research capabilities. We are asking you to help us help (son’s name) and other boys affected with Duchenne Muscular Dystrophy by supporting this very crucial research. The time since (son’s name) was diagnosed has been extremely difficult for us, but we have come to the 61 realization that if we sit and do nothing, it may be too late for (son’s name). Many people have asked if there is anything they can do to help. There is. There are some things you can do to help make a difference. 1. If you would like, please make a donation to Parent Project Muscular Dystrophy. You can mail your donation to us and we’ll forward it, or mail it directly to Parent Project Muscular Dystrophy at 1012 North University Blvd, Middletown, OH 45042. Please mark (“Family name”) on the memo section of your check. (This is a tax-deductible donation.) (You can access the PPMD website at www.parentprojectmd.org for more information.) We believe there will be a cure for Muscular Dystrophy, and with your help we feel it will be in time for (son’s name). 2. Please read the 35+ Easy things to do for DMD Awareness Week page enclosed. With your help we can help give voice to a disorder that has long been under-funded. 3. Hug your children! They are truly a gift from God! (Add a short paragraph here with an update on your son) i.e. Our son, (name) is doing well right now. He is in the (add grade) grade and he loves school. His favorite activities are (add some info). Etc. Etc. Please help us in the race to find a cure for (son’s name). We are committed to battling this disease with all or our might. We remain optimistic and hopeful. Thank you for your help and compassion. Having support from friends and family like you will give us the strength to keep fighting. The future we (and many other families) face is a very difficult one, however, opportunities for curing this disease have never been so great. Sincerely, (Name) 62 DO YOU WANT TO S.T.I.R. THINGS UP? What is S.T.I.R.? When a child is diagnosed with Duchenne or Becker MD, the people around them are anxious to help. Friends and family look fo r ways to show their suppor t. Parent Project Muscular Dystrophy d e veloped S.T.I.R., a monthly giving program that directly influences our research commitments, to offer families and friends a simple and easy way to get invo l ve d . S.T.I.R.—or Striving To Impact Research— raises money to help fulfill our mission: To mobilize people in the United States and Worldwide in collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond. The donations received through S.T.I.R. increase Pa r e n t Project Muscular Dystrophy ’s funding for research by providing more consistent and predictable monthly income. These funds combine with others to make a big impact in the lives of those affected by Duchenne and Becker MD. How does S.T.I.R. work? Parent Project Muscular Dystrophy will automatically process yo u r account on the 15th of each month after we receive your S.T.I.R. registration card. Your S.T.I.R. donation will either be deducted from your checking account or charged to your credit card as you indicate on your registration card. The transaction is secure and cannot be altered without written consent of the account holder. Each S.T.I.R. par ticipant determines how much he or she is willing to commit monthly. Any amount is appreciated and eve ry amount makes a big difference. 2 How do I sign up? Pa r ticipating in S.T.I.R. is ve ry easy, and very secure. Here’s how yo u can S.T.I.R. up suppor t for Parent Project Muscular Dystrophy : 1. First, consider what level of contri bution you are comfort a ble making on a monthly basis. E ve ry amount helps and is appreciated. 2. Decide if yo u ’d prefer to have your checking account automatically debited, or if you’d rather have the amount charged to your credit card. Both are totally secure transactions; it’s up to you. 3. Fill out the attached fo rm and mail it to P a rent Project Muscular Dystro p hy 1012 North University Boulev a rd M i dd l e t own, OH 45042 You can also sign up via our online donations page; visit us at www.parentprojectmd.org. We will begin to process yo u r S.T.I.R. participation the fo l l owing month, and we will send you a receipt to acknowledge your donation at the end of the ye a r. 4. If you feel comfo r t a bl e, please pass along a fo rm to a friend or family member who’d also l i ke to help. We’d be thrilled to send you additional fo rms if yo u ’d like to help us S.T.I.R. it up further by encouraging even more people to sign up. DO YOU WANT TO S.T.I.R. THINGS UP? Pa rent Project Muscular Dystro p hy unites over 1700 families struggling with Duchenne MD. If one person from each family committed to S.T.I.R. up $10 each month, we would raise $204,000 each year. Imagine if each of these people asked four others to S.T.I.R. it up? $1,020,000 would be raised each year. In 2000 and 2001, S.T.I.R. raised over $130,000 with the help of 194 participants. 3 Yes! I want to S.T.I.R. it up! Name: Address: City: Zip: Phone: State: E-mail: Yes! I want to S.T.I.R. it up! Name: Address: City: Zip: Phone: State: E-mail: Credit Card : Credit Card# Expiration: Credit Card : Credit Card# Expiration: Please debit my credit card (circle monthly amount) Please debit my credit card (circle monthly amount) $10 $15 $25 $35 $50 $100 ______other $10 $15 $25 $35 $50 $100 ______other Checking Account: I have enclosed a voided check/check# _ that will register my account and begin my monthly giving. Please deduct (circle monthly amount) $10 $15 $25 $35 $50 $100 ______other Checking Account: I have enclosed a voided check/check# _ that will register my account and begin my monthly giving. Please deduct (circle monthly amount) $10 $15 $25 $35 $50 $100 ______other Signature: Signature: 4