Participation
Matters
A guide for raising money and awareness
for Parent Project Muscular Dystrophy
Dear PPMD family, friend,
and supporter:
On behalf of everyone at Parent Project Muscular Dystrophy (PPMD), I would like to extend
our sincere thanks for your interest in helping us boost our awareness and fundraising
efforts. Whether you have already hosted your own fundraiser or are new to the PPMD
community, your active participation means the world to us.
We’ve compiled Participation Matters because it’s critical for all of us to work together and
within a well-defined set of guidelines. We ask that you carefully review this information
(and keep it handy!) as it contains important legal procedures that are necessary to
follow when raising money on behalf of PPMD. While we value the wonderful creativity
and initiative of our volunteers, our growing organization also needs to ensure that we
effectively follow the stringent tax codes established by the IRS with regard to nonprofit
fundraising activities.
So once again, thank you. Your participation and your leadership is invaluable to us.
Leaders are ordinary people with extraordinary determination. It is because of leaders 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
care information for everyone with Duchenne and their families. You are the strength of
this community.
Together, we can make a difference.
Together, we can raise awareness.
Together, we can raise money to funds critical research.
Together, we will end Duchenne.
Sincerely,
Ryan Fischer
Director of Community Outreach & Advocacy
Contents
C.O.M.P.A.S.S.
A Guide to Planning Successful
Fundraising Events
PPMD’s Media
Relations Roadmap
You Can Do It
2
Contact
12 Media Relations
3
Organize
15 Press Release
4
Materials
6
Press and Publicity
Brand Identity
and Guidelines
7
Accounting
8
Submit
9
Send “Thank You” Notes
Presenting a
Consistent Voice
18 Our Name and Tagline
19 Vision and Mission
20 Values
21 Objectives
22 Key Messages
27 Boilerplate
28 Elevator Pitch
29Implementing the
Identity System
36 Appendix
C.O.M.P.A.S.S.
A GUIDE TO PLANNING
SUCCESSFUL FUNDRAISING EVENTS
This section is designed to help you navigate your
way as you are planning, executing, and wrapping
up your fundraiser. Parent Project Muscular Dystrophy
(PPMD) has streamlined this process as much as
possible to ensure you receive proper support
from us and have a smooth, successful event from
beginning to end.
Parent Project Muscular Dystrophy is a tax-exempt
501(c)(3) organization. This nonprofit status is crucial
to our ability to work toward our mission; it must be
held in the highest regard. You can help by following
PPMD’s C.O.M.P.A.S.S. event guidelines.
The following guidelines will help to ensure that your
event is a huge success. It will also answer questions
you may have about running an event for PPMD.
After your initial brainstorming phase, here is how
you get started with putting together your event.
Parent Project Muscular Dystrophy | 1
Q: What should the name
of my event be?
A: We suggest choosing a name
that reflects the type of event
you are hosting and the family
it is benefiting. We also strongly
recommend including Duchenne
in the name. For example,
“The Smith Family Golf
Tournament for Duchenne
muscular dystrophy” or “Golf
for Mike to end Duchenne.”
Names like “Michael’s
Challenge” or “Race for Tim”
are not specific and may be
confusing to first-time event
attendees with regard to your
event’s purpose.
Contact
First things first, tell PPMD about your event!
Why is this necessary?
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.” By
providing PPMD with this information in advance, we will be able to
better assist you as you begin planning your event. If have trouble
deciding what type of event to host, give us a call. We will do our
best to offer suggestions. Choose the type of event that best reflects
your personality, is rewarding for you, and one that you have the time
and the resources to manage. For a list of fundraising ideas, visit
ParentProjectMD.org/ideas.
Please contact Ryan Fischer, PPMD’s Outreach Director, at (201) 944-9985
or Ryan@ParentProjectMD.org to discuss the fundraising event you have
in mind. We will add your event to our online calendar.
To start, we will need to know:
• Name of your event
• What kind of event it is (auction, dinner, golf tournament, etc.)
• Location (City, State)
• Contact name and phone number
Web Option Available for Your Events
PPMD will post your event on our calendar at ParentProjectMD.org/
Connect_calendar. You have the ability to customize the page to your
liking. Think of it as a blank slate.
PPMD can help create a logo for your event as well. Please contact
Danielle Garrigan at Danielle@ParentProjectMD.org to learn more.
2 | Participation Matters
Organize
Parent Project Muscular Dystrophy strongly
encourages you, the event leader, to organize
an event committee. Don’t overwhelm yourself
by trying to put on the entire event alone.
Why this is necessary
Events can be overwhelming. Form a committee, or team, to help
you plan, coordinate, and execute your event. PPMD often works
with families who try to organize their event alone. It is not to say that
this can’t be done, but it certainly adds a lot of pressure on that one
person, or one family, to do everything. We suggest gathering a group
of family and friends that you can trust and depend on (for deadlines,
assistance, honesty, etc.). Sharing responsibilities also makes everyone
more invested in the success — and fun — of the event! Once you have
determined who will be on your event committee, organize a kickoff
meeting to review the timeline and assign some team leaders. By
making these decisions early, you help give everyone involved an idea
of what you expect from their participation. It will also give you a great
guide as you move forward with your event.
Q: Who should I ask to join my
event committee?
A: Ideally, you should try to
organize your committee with
reliable “go getter” type people.
It takes a certain type of fearless
person who is committed to the
cause to solicit auction items,
sponsorships, and donations.
This is also a great opportunity
to involve those family members
and friends who always ask,
“What can I do to help?”. By
inviting them to be on your event
committee and by assigning
them tasks, you empower
them to create change in the
Duchenne community. You can
also look for people based on
certain strengths (i.e.: a friend
who works for the local paper
to be your press person).
Parent Project Muscular Dystrophy | 3
Q: Is there a charge for using
PPMD’s materials at my event?
A: No, we offer event materials
free of charge to help you
promote PPMD’s mission and
to help raise awareness for
Duchenne. Our only request
is that you return any unused
items to PPMD’s development
office in New Jersey. This helps
us maintain a healthy supply of
materials and reduce the cost
to produce them.
Materials
Parent Project Muscular Dystrophy offers materials
to support your event.
Our materials range from brochures and fact sheets to balloons, flyers,
and an overview video. We are very happy to discuss the materials we
have available and which may be the best fit for your event.
Parent Project Muscular Dystrophy is happy to provide you with
free items to help make your event even more spectacular and take
awareness to the next level. To learn more or to order items for your
event, contact our Project Coordinator Danielle Garrigan:
Danielle@ParentProjectMD.org.
PPMD Event Materials
• C
ustom logo design for your event
• O
nline fundraising page with URL you can send to friends and family
• Red End Duchenne Bracelets
• T-shirts for giveaways
• End Duchenne X Pins
• Pom Poms
• Flyers
• Pens
• Balloons
• End Duchenne X Magnets
4 | Participation Matters
Fundraising online for your event
You have the option of creating your very own fundraising page
specifically for your event! It’s an easy way to track donations and
send thank you’s to those who cannot attend. Contact Ryan Fischer
(Ryan@ParentProjectMD.org) to find out more.
We can change the name to the name of your event so that people can
donate online. Ex: Donate to
(Event Name). We can also make you
an event page. See example of an upcoming event below.
Parent Project Muscular Dystrophy | 5
Can I use PPMD letterhead for
our solicitation letters?
PPMD actually has special event
stationary for you to use. Please
contact the New Jersey office to
request the stationary.
Important: Before you print your
own materials, please send a
draft copy of invitations, tickets,
programs, press releases etc.,
to the PPMD development
office in New Jersey. We need
to approve these materials and
may offer suggestions. PPMD
also offers templates for printed
event materials. We’re happy
to share these templates that
other PPMD fundraisers have
successfully used in the past.
Press and Publicity
A friendly reminder: Always use the entire name
of our organization: “Parent Project Muscular
Dystrophy”. Many people mistakenly refer to
us as “The Parent Project,” which is the name
of a different nonprofit organization.
Why this is necessary
As a growing nonprofit organization, it is increasingly important
for Parent Project Muscular Dystrophy to maintain a strong identity.
It is also in the best interest of the Duchenne community to use a
consistent, clear voice in all communications. “The Parent Project,”
is actually the name of 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. Before sending
out any correspondence including event invitations or letters please
double-check with Parent Project Muscular Dystrophy to be sure you’re
using the correct name. After you write out “Parent Project Muscular
Dystrophy” once, you may abbreviate it to “PPMD” thereafter. We
need to approve these materials and will offer suggestions, if any.
PPMD also offers templates for printed event materials. We’re happy
to share the templates that other PPMD fundraisers have used
successfully in the past. See our section on “Generating Press” to
learn more about how to contact local newspapers, radio stations,
and other affiliates. Contact our Communications Director, Will Nolan
(Will@ParentProjectMD.org), if you have any questions.
6 | Participation Matters
Accounting
All fundraising events carried out under the
Parent Project Muscular Dystrophy name and logo
must adhere to generally accepted accounting
procedures (GAAP) for nonprofits.
Why this is necessary
As we mentioned earlier, Parent Project Muscular Dystrophy has a legal
responsibility to accurately report its income using generally accepted
accounting practices (GAAP) for nonprofits. Please follow the guidelines
listed below to help us keep track of proceeds from your event.
How to accept donations by check
Please ensure that all checks and donations are made out to: “Parent
Project Muscular Dystrophy” or “PPMD.” Make photocopies of all
checks and event-related correspondence. When you collect donations
and in-kind items for you event, please make photocopies of checks and
correspondence for your records and ours. Keeping copies will provide
a cross-reference, if there are any problems, and will also provide you
with a list from which to write personal thank-you notes. Clearly print
your event name on each check. As you collect the donation checks,
clearly print your event or family name on each one. For example, “The
Smith Family Golf Tournament for Duchenne” or “Donations made in
honor of The Smith Family.” Please bundle your donations together and
mail them to PPMD’s development office.
Q: Can I open a bank account,
deposit all the donation checks
there, then cut a big check to
PPMD?
A: No, this does not adhere to
generally accepted accounting
practices (GAAP) for nonprofits.
If you deposit a check made out
to PPMD into your bank account,
this is considered “co-mingling”
funds. Secondly, if your donors
make a check payable to you,
then they haven’t made a
“donation” to PPMD; therefore
we cannot provide them with a
receipt acknowledging their gift
and giving them the opportunity
to deduct it from their taxes.
Lastly, to open a bank account
under the organization’s name
is illegal.
How to take credit card donations
PPMD can also provide you with credit card information forms that will
allow you to take credit card donations at your event. We do not send
actual credit card processing machines. We send a simple, short, fill-inthe-blanks form. The information you collect is necessary for PPMD to
properly receipt the donor.
What to do with cash donations
If you receive cash donations, please go to your local bank and get a
bank check (issued to Parent Project Muscular Dystrophy), or a money
order for the total cash amount. Then, mail it to the PPMD development
office in New Jersey. Or make it even easier and create an online
fundraising page that allows donors to give directly to PPMD through
your event page. Then you avoid having to deal with checks, credit
cards, or cash directly.
Parent Project Muscular Dystrophy | 7
Q: What if I don’t want PPMD
to mail anything to my friends?
A: PPMD does not send monthly,
bi-monthly or even quarterly
mailings to our group of
“friends.” We are very selective
about what mailings each
group in our database receives.
As a nonprofit, we rely on the
generosity of our constituents
to support our efforts in the
Duchenne field. Although 95%
of all of our donors support us
because they hold our cause
near and dear to their hearts, we
do give donors the opportunity
to join our “do not mail” list.
Fundraising online for your event
You have the option of creating your very own fundraising page
specifically for your event! It’s an easy way to track donations and
send thank you’s to those who cannot attend. Contact Ryan Fischer
(Ryan@ParentProjectMD.org) to find out more.
Submit
Please mail donations, donor information, and
any additional event correspondence to Ryan
Fischer, c/o Parent Project Muscular Dystrophy’s
development office within 30 days after your event.
Our address is:
Ryan Fischer
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Only send donations in the form of checks, credit card information,
bank check, or money order.
If someone gives you cash, please deposit the cash and write us a check
or money order for the amount. Please send us the person’s name,
address, donation amount, and event name. This way we can properly
receipt them.
If you ask your donors to mail their contribution directly to the PPMD
office, please ask them to write your family’s name or your event’s name
somewhere on the check.
Why this is necessary
The donor’s information is entered into PPMD’s database with a note
that they made a contribution via your fundraiser. Again, please ensure
that each check clearly indicates your event’s or your family’s name.
Doing this helps us appropriately categorize donations in our database.
In turn, we’re able to generate accurate fundraising reports and donor
receipts in a timely manner. The donor’s information is not shared with
any other individuals, organizations, or corporations. Individuals in our
database may receive information directly from PPMD in the future,
including (but not limited to) information they have requested
or information about other PPMD events and activities in their area.
8 | Participation Matters
Expense Reimbursement Forms
Parent Project Muscular Dystrophy recognizes that hosting an event
often incurs associated costs. It is our policy to deposit funds into
a fundraising account under your event name as soon as we receive
them. Once there are funds deposited on your behalf, PPMD is happy
to reimburse you for event-related expenses. All expenses must be
reported on PPMD’s expense reimbursement form and submitted
with corresponding receipts. For more information on expense
reimbursement, please contact Ryan Fischer at 201-944-9985.
All events must keep fundraising costs under 30% of the gross
proceeds, as outlined by PPMD’s fundraising policies. By adhering
to these strict fundraising percentages, PPMD maintains excellent
percentages in our reporting, which helps us secure government,
foundation, and corporate giving.
Send “Thank you”
Notes
Parent Project Muscular Dystrophy believes in the
importance of donor integrity and is committed to
acknowledging the generosity of all PPMD donors.
Q: How soon will donors receive
their “thank you” letter and tax
receipt from PPMD?
A: Once donations are received
in the PPMD’s development
office, we input each check and
issue “thank you” letters and tax
receipts. This process usually
takes anywhere from 2-4 weeks,
depending on the time of year
and volume of donations.
Why this is necessary
All tax receipts must be issued from the Parent Project Muscular
Dystrophy corporate office in order to comply with Federal Law.
However, we also encourage you, the fundraising host, to send
a personal “thank you.” In your note, you may want to include a
sentence that states, “Keep an eye out for your official tax receipt
in the mail from Parent Project Muscular Dystrophy.”
Parent Project Muscular Dystrophy | 9
PPMD’s Media
Relations Roadmap
YOU CAN DO IT
Hosting a Parent Project Muscular Dystrophy
(PPMD) fundraising event in your community
is a terrific opportunity to garner media attention.
The effective use of free media opportunities
gives you the chance to raise awareness about
Duchenne among your community and to call
attention to the importance of raising funds
for research.
Parent Project Muscular Dystrophy | 11
Media Relations
You don’t have to be a seasoned public relations professional or
publicist to capture the attention of editors, reporters, and bloggers.
However, you have a better chance of getting your event “covered”
by local and online media with some proven methods of generating
media interest. It often takes lots of friendly follow up and persistence
to break through the clutter in someone’s inbox. Your biggest strength
is your passion and enthusiasm for — and accurate knowledge of — the
importance of raising Duchenne research dollars. And, of course, telling
your family’s story.
Tools to help you get press
To make it easier for you, Parent Project Muscular Dystrophy has
put together some tips on how best to catch an editor’s ear and
communicate messages about PPMD and Duchenne. On the following
pages, you’ll find:
• Tips for pitching the media
• Key talking points on PPMD and Duchenne
• A “swiss cheese” pitch letter/email and press release
(you fill in the blanks!)
• General interview tips
Confidentiality and sensitivity issues
Parent Project Muscular Dystrophy is sensitive to the fact that discussing
Duchenne can bring up sensitive issues for you and your family. We
understand if there are parts of these press materials that you would
like to edit in order to keep you and your family comfortable. Talking
about Duchenne can be difficult, but we also encourage you to ‘go for
it’ because of how hugely important it is to bring this disorder to the
forefront. Reporters want to hear your story. They are less interested in
generalities.
Research: Know your local reporters and their beats
As with any form of communications, know your audience. Before you
email a pitch, press release, or pick up the phone, compile an accurate
media list. Find the names of editors and reporters who report on
related topics, such as community-, health- or science-related topics.
In other words, find out their beat. And you can often find their contact
information (phone, fax, email) and instructions for submitting a story
idea online or in a hard copy of the publication. Also search for websites
and bloggers that cover your community. And don’t forget Facebook!
Many communities now have Facebook pages that allow residents to
post upcoming events.
12 | Participation Matters
Here are some reporters most likely to cover your story:
Daily newspapers – Features Editor, Calendar Editor, Health Reporter,
Metro Desk
eekly newspapers – Features Editor, Calendar Editor, Health
W
Reporter, Metro Desk
Television stations – Assignment Desk, News Desk, or Health Reporter
Radio news stations – News Desk
Pitch: Tell your story
A “pitch” is used to make an editor or a reporter sit up and take
interest in your story. It can take the form of a short email, one-page
letter (see appendix), or a phone call. The two most important things
to remember: keep it brief (it’s a teaser) and give them a compelling
reason why they should cover your story. For instance, why would your
event or your personal story be of interest to their readers? Why are you
hosting a fundraising event? At the end of the letter or conversation,
offer to send them more information in the form of a press release
(see Appendix, page 40).
Tips for talking about PPMD & Duchenne
With its complex nature and extensive scientific terminology, Duchenne
muscular dystrophy can be difficult to fully comprehend. We’ve compiled
our recommendations below to help you better communicate about
Duchenne with reporters, event attendees, and other parents.
Words like ‘normal’, ‘fulfilled’, and ‘productive’ should be used carefully
so the sentence does not imply that those affected by Duchenne
aren’t ‘normal’, ‘fulfilled’, or ‘productive’. Please see the Brand Identity
Guidelines (Page 16) for our mission statement and facts about Duchenne.
Negative adjectives
and phrases to avoid
Positive adjectives
and phrases to use
Suffers from
Diagnosed with
Terrible, debilitating disease
Progressive muscle disorder
Afflicted with
Affected by
Wheelchair bound/Confined
to a wheelchair
Needs the assistance
of a wheelchair
Disease (viral)
Disorder (genetic)/Condition
Crippling or crippled
Progressive muscle disorder
Parent Project Muscular Dystrophy | 13
When you talk or email about Duchenne to the media,
here are a few things to keep in mind
Be prepared.
• Know the five “Ws” of your event: who, what, when, where, why (and how).
• Be familiar with the publication and its audience.
• H
ave PPMD’s mission statement and key messages with you for reference.
(Pages 21, 24)
Be truthful and direct.
• Make your key points as simply and as often as possible.
• Have engaging examples or anecdotes to back up your key points.
Tell your personal story.
•If you don’t know the answer to a reporter’s question, admit it and offer
to get the information for the reporter as soon as possible.
(Be sure to follow up!)
Be confident and relaxed.
• You are the expert.
• A successful interview is often a conversation, not an inquisition.
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 to back up or rephrase a question.
Be aware of saying things “off the record.”
• It doesn’t exist; what you say can be quoted.
Never say “no comment.”
• Give a reason for why you can’t discuss certain topics or issues.
• There are many ways to give a “non-answer” answer. You can redirect
the conversation by saying, “I can’t discuss that, but what I can tell you
is that our program is successful because…”
Don’t be afraid to show emotion.
• T
his is a very emotional topic for you and your family…and for many
other families out there that may connect with your message and be
inspired by your story.
Silence, or long pauses, are OK.
• When you’ve made your point, stop speaking. Don’t feel like you
have to keep talking. People often speak nervously to fill the silence,
which may dilute their original, well-articulated point.
Remember, 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.
14 | Participation Matters
Press Release
Parent Project Muscular Dystrophy has written a “swiss cheese” Event
Press Release (see Appendix). It contains key points and messages and
leaves “holes” for you to fill in and distribute to the media. It’s suitable
for all types and sizes of events - from letter writing campaigns, to
change drives, to bake sales, to dinner dances. Any and every event
counts and we want as many people as possible to know about both
the event and Duchenne.
After you’ve personalized your press release, you’re ready to send
it via fax or email to the contacts on your media list. Be mindful of
publications’ deadlines. In some instances, they need to be notified six
weeks before the event in order to be included in the calendar listing.
Follow up: be friendly, yet persistent
After you distribute your press release to your media list, be sure to
follow up. Editors and reporters are typically under deadline and have a
lot going on, so give them a few days to get to it. Then pursue your first
round of follow up with a call or email. We suggest that you ask if they
received the release OK, gauge their interest in covering your story, and
stress that you’re available to help.
Don’t be discouraged if it takes you several attempts to reach an editor
or reporter. Follow up, whether it’s the first-round or third-round, is a
great opportunity to stay in the reporter’s mind and build a relationship.
Sometimes just a string friendly, informative 30-second conversation can
go a long way.
If a reporter ever asks to speak with someone at PPMD, refer them to
our Communications Director, Will Nolan at Will@ParentProjectMD.org.
Press Placement
Parent Project Muscular Dystrophy would appreciate receiving a copy
of all press placements you receive, so we can keep our media records
as accurate and up-to-date as possible. We also like to share any
successful press placements with the community via Facebook and the
community site.
Final Outcome
Please do not to be discouraged if your press releases and story ideas
do not get placed. For whatever reason, many press releases 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.
Parent Project Muscular Dystrophy | 15
Brand Identity
Guidelines
PRESENTING A CONSISTENT VOICE
The following pages provide communications tools
that keep our messaging and visual identity clear and
consistent. We have compiled this guide for your use in
order to help you better understand and communicate
about both Duchenne and Parent Project Muscular
Dystrophy (PPMD).
In this section you will find information about our
organization, general facts about Duchenne, and
specific language we recommend using in conversation
and in print. We have also included important
information about using our logo correctly.
Consistent branding (language and visuals) presents
PPMD to the public in the most professional manner
possible and helps avoid confusion when discussing
this complex disorder. A successful brand communicates
stability, creates recognition for our organization,
raises awareness more effectively, and helps generate
income. We thank you for your careful attention to our
branding efforts.
Parent Project Muscular Dystrophy | 17
Our Name
and Tagline
Our name
For reference in printed materials, please use our full name: Parent Project
Muscular Dystrophy. The abbreviation PPMD should be used only after the
full name has already been mentioned within the document.
Parent Project Muscular Dystrophy
Our name
Our tagline: a simple explanation
The tagline works with our name to support and reflect who we are.
Leading the fight to end Duchenne
Our tagline
18 | Participation Matters
Vision and Mission
A vision statement articulates the change our
organization wants to make in the world. While
mission statements describe the actual purpose of
an organization, vision statements paint a picture
of the future, often idealistic and motivating. What
will it look like if Parent Project Muscular Dystrophy
achieves its overarching impact
on society?
Our vision
Parent Project Muscular Dystrophy envisions a world in which all young
men with Duchenne survive their diagnosis and live long, healthy lives.
The mission statement explains what Parent Project
Muscular Dystrophy does and why it exists. If the
vision statement expresses our ideal world, the
mission statement expresses our specific role in
making that ideal world come to pass.
Our mission
Parent Project Muscular Dystrophy’s mission is to end Duchenne. We
accelerate research, raise our voices in Washington, demand optimal
care for all young men, and educate the global community.
Parent Project Muscular Dystrophy | 19
Values
Values speak to the philosophy that lies at the heart of our
work. A values statement articulates the key beliefs that
guide major programs as well as day-to-day decision-making.
Values motivate staff, board members, and volunteers,
and serve as a public declaration of what Parent Project
Muscular Dystrophy wants evident in, and reflected by,
its activities.
Our Values
Our work and relationships are driven by several deeply held principles:
We value…
Family
Young men with Duchenne and their families are at the heart of everything
we do, and they always come first.
Impact
We believe that the fight to end Duchenne requires a broad approach that
combines research, advocacy, care, and education, to help us understand,
treat, and ultimately find a cure.
Optimism
We see many reasons for hope—from improved treatments to more
awareness; from the dedication of our researchers to the passion of our
community; from the resilience of our families to the longer lives boys
are living today.
Knowledge
We believe that knowledge is power—whether it’s researchers seeking
life-saving treatments, health care professionals looking to give the best
possible care, parents who just want their child to live longer, or young
men who just want to understand what’s happening to them.
Collaboration
We are strongest when we are a united community that works together
to save lives.
Determination
We will not end our fight until every young man with Duchenne survives
his diagnosis.
20 | Participation Matters
Objectives
Our strategic objectives are the specific goals Parent
Project Muscular Dystrophy must achieve to fulfill
its mission. Clear objectives help us plan, prioritize,
and assess the success of our work, and are set or
updated every few years as part of strategic planning.
Strategic Objectives
Research
To identify and aggressively fund the most promising near and long-term
Duchenne research and cutting-edge therapies.
To stimulate new research to ensure that the therapeutic pipeline is rich
with opportunity.
To encourage and support the pharmaceutical industry to maximize
their investment in Duchenne.
Advocacy
To ensure the patient’s voice is heard in Washington, DC, so policies
lead to improvements in the lives of families affected by Duchenne and
reflect the needs of the whole community.
To work with the National Institutes of Health and other agencies to
ensure that Duchenne research and clinical trials remain a high priority.
To work with federal regulatory agencies so they address Duchennespecific concerns in their decision-making.
Care
To identify gaps in care for young men with Duchenne and work toward
solutions.
To work with clinicians and other health care professionals across the
globe to ensure all Duchenne patients have access to optimal care.
Community
To provide a supportive environment in which people affected by
Duchenne can share needs, concerns, and common experiences.
To work collaboratively with stakeholders who make up the Duchenne
population and to participate actively and effectively in the international
Duchenne community.
Parent Project Muscular Dystrophy | 21
Education
To increase recognition of muscle weakness among healthcare
professionals and promote early diagnosis.
To share up-to-date information about treatment and care options with
all members of the Duchenne community.
To raise awareness about Duchenne and provide educational materials
to the global community.
Key Messages
Key messages serve as the foundation for written
communications efforts. They define who we are,
who we serve, what sets us apart, in as concise a
form as possible. Key messages summarize the big
ideas behind our organization and the activities that
fulfill your mission.
Our key message structure
We have put our messages into the following structure:
1. Problem: What is Duchenne and how does it affect those who get it?
2. Impact: How does our work make a difference in the fight to end
Duchenne?
3. Action: How can you help us end Duchenne?
Problem: What is Duchenne and how does it affect those
who get it?
Duchenne is the most common fatal genetic disorder diagnosed
in early childhood.
Duchenne is a progressive and fatal form of muscular dystrophy.
• Duchenne affects one out of every 3,500 live male births.
• Duchenne occurs across all races and cultures.
• Most young men with Duchenne won’t survive much beyond
their twenties.
• A
lthough treatments may slow down its progression, Duchenne
has no cure.
22 | Participation Matters
Anyone can be affected by Duchenne.
• Duchenne is caused by a mutated gene found on the X-chromosome.
• Because girls have two X-chromosomes (an “extra”) and boys only
have one X-chromosome, Duchenne primarily affects boys.
• Because it’s a genetic disorder, Duchenne can be passed down
from parent to child.
• About 35% of cases are caused by spontaneous genetic mutation
—in families with no history of Duchenne.
Duchenne slowly robs young men of the use of their muscles,
which can lead to serious medical problems, especially heart
and lung failure.
• Early in life, boys with Duchenne develop more slowly—sitting up,
standing, walking, and talking.
• Boys with Duchenne typically lose their ability to walk between the
ages of 10 and 14.
• By their late teens, young men lose their upper body strength,
including the use of their arms.
• During their teenage years, young men with Duchenne will need a
respirator to help them breathe at night. Eventually, they will need
constant support.
• Cardiac problems will develop and can start early or during the
teenage years.
• Young men with Duchenne typically live into their twenties or
early thirties.
Although there’s currently no cure, young men with Duchenne are
remaining independent, walking for more years, and living longer
than ever before, thanks to earlier diagnoses and better treatments
and care.
Impact: How does Parent Project Muscular Dystrophy’s
work make a difference in the fight to end Duchenne?
Everything we do—and everything we have done since our founding
in 1994—helps individuals with Duchenne live longer, stronger lives.
We will not rest until every young man has a treatment to end Duchenne.
Broader research: With a comprehensive approach that includes an
aggressive research and advocacy agenda, we’ve helped leverage millions
of dollars in government funding. No other organization has secured as
much funding for research that affects so many young men with Duchenne.
Parent Project Muscular Dystrophy | 23
• W
hen we began our work, there was little investment in Duchenne
research. Today, hundreds of millions of dollars are invested every year.
• W
e invest in research that benefits every young man touched by
Duchenne, no matter his age, stage of progression, or type of genetic
mutation.
• W
e invest deeply in treatments for this generation of boys and in
research that will benefit future generations affected by Duchenne.
• W
e have leveraged over $450 million into muscular dystrophy research,
including over $192 million for Duchenne-specific research, by advocating
to Congress to pass the MD-CARE Act.
Better treatment and care: Since our founding, we have demanded that
the treatments and care available to Duchenne patients continue to take
giant leaps forward
• W
e work with any person, organization, community, or agency that
helps young men affected by Duchenne—and their families—have
easier, healthier, and happier lives.
• W
e work closely with federal agencies, such as the Food and Drug
Administration, the Centers for Disease Control and Prevention, and
the National Institutes of Health, to ensure that Duchenne remains
a priority and to help guide life-extending treatments through the
regulatory process.
• W
e spearheaded the effort to create—and will continue to update
—clearly defined Care Considerations for our sons with Duchenne,
so that they live longer, healthier, happier lives.
• W
e lead the effort behind DuchenneConnect, the only Duchennespecific, web-based database that uses medical information to
connect Duchenne patients with clinical trials and other important
research efforts.
• We provide practical and emotional support for parents and siblings.
• W
e make sure the most up-to-date information about mobility, diet,
educational issues, and exercise is easily and widely available to all
caregivers and families affected by Duchenne.
• W
e make sure teachers and school administrators have what they
need to give our young men with Duchenne fulfilling educational lives.
• W
e educate early childcare providers (including health care professionals
and early childhood learning professionals) so that diagnoses happen
early and our sons have the best possible quality of life.
24 | Participation Matters
Stronger community: We have created a supportive and informed
community for families, researchers, and healthcare providers—and
we unify the many groups working to end Duchenne because, together,
our efforts are stronger.
• We host the largest, most comprehensive international gathering—
our Annual Connect Conference—focused entirely on Duchenne and
attended by hundreds of parents, boys, siblings, scientists, researchers,
and healthcare professionals.
• We host an advocacy conference every year, which is the only officially
organized gathering on Capitol Hill for the Duchenne community.
• We organize the parent-led outreach initiative FACES—which stands
for Families Advocating, Connecting, Educating, and Supporting
—so that families can connect with the other Duchenne families that
live near them.
• W
e host a unique community site, so that families affected by Duchenne
all over the world can connect with other families, share stories, discuss
concerns, get news, and exchange information.
• W
e provide information, printed materials, and advice to people around
the country, so that they can host community awareness and fundraising
events.
• We participate in races around the country through Run For Our Sons,
which makes it easy for people to get involved and help raise money
and awareness in the fight to end Duchenne.
Greater awareness: Thanks to our efforts, Duchenne is more widely
known and understood by the general public, healthcare providers,
and policymakers.
• We’ve created national and regional outreach campaigns by working
with the Centers for Disease Control and Prevention to help underserved
communities recognize the signs of Duchenne.
• We’ve helped the medical community understand Duchenne better,
which means that families affected by Duchenne get earlier diagnoses,
resulting in our sons living longer and stronger.
• We’ve made sure that policymakers in Washington, DC understand
Duchenne and give it the attention it deserves.
•
We produce educational materials for anyone who wants them.
• We provide free resources and information online and through social
media.
• We raise public awareness each year through Coach to Cure MD,
a day for Duchenne with a national television presence through
college football.
Parent Project Muscular Dystrophy | 25
Action: How can you help end Duchenne?
We are only as strong as our community, and we rely on your help.
We must end Duchenne. And together, we will end Duchenne.
• You can donate or raise money.
• Make a donation online at www.ParentProjectMD.org.
• Host an event to raise money or create a personal fundraising page.
• Enroll in our monthly giving program, Striving to Impact Research (STIR).
• H
elp us find corporate sponsors for the Annual Conference or other
events throughout the year.
• Participate in a Run For Our Sons event, or support a participant.
• Text CURE to 90999 to give during the Coach to Cure MD event.
• H
ave any donation you make to us matched by your place
of employment.
• You can help us raise awareness.
• T
ell friends and family about Duchenne and the important work that
Parent Project Muscular Dystrophy is doing.
• J oin us during our Advocacy Conference in Washington, DC and meet
with your Congressional representatives face-to-face to encourage
them to support policies that advance Duchenne research and
awareness (such as the MD-CARE Act).
• C
all your Congressional representatives to advocate for Duchenne
research and beneficial policies.
• S
ign up for action alerts, so that we can reply quickly and forcefully
to issues that affect the Duchenne community.
• Talk to the media about Duchenne and PPMD’s important work.
• Join the Duchenne community.
• A
ttend the Annual Connect Conference to learn the latest about
Duchenne and to meet the families, advocates, researchers, and
healthcare providers that make up the Duchenne community.
• J oin the PPMD community site at http://community.ParentProjectMD.org/
to connect with other members of the Duchenne community.
• F
amilies affected by Duchenne are all over the country. We can help
you find another family near you.
• Sign up for our newsletter.
• Organize an awareness event, or attend an event near you.
• L ike us on Facebook, follow us on Twitter, and subscribe to our
YouTube channel.
26 | Participation Matters
Boilerplate
Boilerplate is copy that distills key messages down
into short, readable prose, written in the tone and
style of our organization. You will use it verbatim in any
communications piece that includes “About Parent
Project Muscular Dystrophy” copy. Consistent use of
our boilerplate demonstrates professionalism and helps
us establish a clearer sense of who we are in the minds
of our target audiences.
Our boilerplate
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their
muscle strength. Parent Project Muscular Dystrophy’s mission is to end
Duchenne.
We invest deeply in treatments for this generation of young men affected
by Duchenne and in research that will benefit future generations. We
advocate in Washington, DC, and have secured hundreds of millions of
dollars in funding. We demand optimal care, and we strengthen, unite,
and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in
1994—helps boys with Duchenne live longer, stronger lives. We will not
rest until every young man has a treatment to end Duchenne.
Go to www.ParentProjectMD.org to learn how you can support our efforts
and help families affected by Duchenne.
Parent Project Muscular Dystrophy | 27
Elevator pitch
An elevator pitch is a quick summary that introduces
someone to our organization in 30 seconds or less.
It serves as the answer to the question, “What is
Parent Project Muscular Dystrophy?” and is useful
at cocktail parties, at special events, or (as the name
implies) during a quick ride in the elevator.
Ideally, staff, board members, volunteers, and any other “ambassadors”
who represent the organization will memorize this language to repeat it
verbatim in a natural, conversational way.
In most situations, our elevator pitch is just a conversation starter.
What follows will depend on what the other person is asking/interested
in, or will be based on the speaker’s own experience or role within
the organization.
Our elevator pitch
Parent Project Muscular Dystrophy is the leading nonprofit in the fight
to end Duchenne, which is fatal and has no cure. We fund programs that
help young men with Duchenne live longer, stronger lives.
28 | Participation Matters
Implementing the
Identity System
The PPMD typefaces
The primary typeface used for Parent Project Muscular Dystrophy
materials is Avenir 35 Light. For main body text, a type size of 10 points
is recommended, with 14 point spacing between lines (10/14). Avenir
85 Heavy may be used for emphasis within the text. Trade Gothic Bold
may be used as a secondary typeface for subheadings or pull quotes.
The font files for these typefaces are available for purchase at www.
fontshop.com.
Avenir 35 Light
ABCDEFGHIJKLMNOPQRSTUV WX Y Z
abcdefghijklmnopqrstuvwxyz
Avenir 85 Bold
ABCDEFGHIJKLMNOPQRSTUVWXYZ
abcdefghijklmnopqrstuvwxyz
Trade Gothic Bold
ABCDEFGHIJKLMNOPQRSTUVWXYZ
abcdefghijklmnopqrstuvwxyz
For digital or web-based applications, please use Arial Regular and Bold.
These fonts perform well onscreen, are widely available, and come preinstalled on most computer systems.
Arial Regular
ABCDEFGHIJKLMNOPQRSTUV WX YZ
abcdefghijklmnopqrstuvwxyz
Arial Bold
ABCDEFGHIJKLMNOPQRSTUV W X YZ
abcdefghijklmnopqrstuvwxyz
Parent Project Muscular Dystrophy | 29
PROTECTING THE LOGO
It’s important to use the logo
properly, ensuring its correct
and legible appearance. Please
avoid the following misuses of
the logo.
• D
o not use busy graphics,
images, or patterns behind
the logo.
• D
o not change the colors of
the logo.
• D
o not alter the height/width
proportions of the logo (i.e.
stretching or compressing)
• D
o not change the fonts used
in the logo.
• D
o not rearrange the words in
the logo.
• D
o not change the size or
positioning of the tagline in
the logo.
• D
o not rotate the logo.
• D
o not add special effects to
the logo (gradients, shadows,
etc.)
The PPMD logo
The PPMD logo was designed to convey strength and leadership
within the Duchenne muscular dystrophy field, balanced by a sense of
welcome and openness. The logo should appear on all official PPMD
documents. Please do not try to retype or recreate the logo—always
use master digital art files. Please feel free to contact us to request the
logo files.
Main logo
and tagline:
Horizontal
logo and
tagline:
Logo without
tagline:
Whenever possible, the tagline should be used with the logo. If you
must use the logo at very small sizes, the version without the tagline
may be used. Color, size, and spacing guidelines are provided on the
following pages.
30 | Participation Matters
Logo size and placement
The preferred placement for the PPMD logo is in the upper left of the
page or screen, where it will be among the first things seen by readers.
For maximum visual impact, the logo should be set apart from other
visual elements by adequate empty space. The “x” area shows the
minimum distance that should exist between the logo and other marks
or elements or the edge of the page. This is especially important when
the logo appears alongside other organizations’ logos.
To ensure legibility, logos should not appear smaller than the minimum
sizes indicated.
x = 1/2 logo height
minimum size:
1
/2 inch high or
50 pixels high
x
x
x =logo height
x
minimum size:
5
/16 inch high or
30 pixels high
x
x
x =logo height
minimum size:
1
/4 inch high or
20 pixels high
x
x
Parent Project Muscular Dystrophy | 31
PLACING THE LOGO ON
A COLORED BACKGROUND
OR OVER A PHOTO
While a simple white
background is always best, the
logo can effectively be placed
on top of a colored background
or even over a photograph.
Just be sure to follow these
guidelines:
• If the background is a very
light tint, like off-white or pale
blue, use the main red and
gray logo.
• If the background is a brighter
or darker color, use the white
knockout version.
• If the logo must be placed
over a photo, be sure to
choose an area of the photo
where the background is
closest to a solid color.
(Cloudless blue sky works
well.) If the color is very light,
the red and gray logo may be
used. If the color is brighter or
darker, use the white knockout
version.
• L egibility is key. If the logo
doesn’t seem to stand out
enough from the background,
find a better placement for it.
Logo color variations
There are several acceptable color variations for the logo, depending
on the context where it appears. When printing in two or more colors,
or for use onscreen, the logo should appear in PPMD Red and PPMD
Gray. When printing in one color only, the entire logo should appear
in PPMD red. On dark-colored backgrounds, a white “knockout” version
may be used.
Please follow the guidelines below to determine which version is most
appropriate. Detailed color breakdowns are listed on the following pages.
Full-color and
two-color printing
and onscreen:
One-color
printing
Black-and-white
printing
Knockout for
dark-colored
backgrounds:
32 | Participation Matters
The PPMD colors
The PPMD color palette includes color breakdowns for four-color
process printing (CMYK), printing with Pantone Spot Colors on coated
(C) and uncoated (U) paper, and for digital and web-based applications
(RGB and HEX). Please be sure to choose the proper color settings for
your project format, otherwise colors may not appear correctly. If you
are unsure which to use, your print vendor should be able to answer any
questions.
Main Colors
PPMD Red
PPMD Gray
PPMD Gray Alternate
Pantone 186U
Pantone 193C
CMYK: 0/100/81/4
RGB:229/25/55
HEX:#E51937
Pantone 446U
Pantone 445C
CMYK: 21/0/23/75
RGB: 76/90/82
HEX: #666666
(70% Black, may be used if
spot colors are unavailable)
CMYK: 0/0/0/70
RGB: 102/102/102
HEX: # 6D6E71
PPMD Light Blue
PPMD Light Green
PPMD Khaki
Pantone 277U
Pantone 277C
CMYK: 25/0/0/3
RGB: 189/214/239
HEX:#BDD6EF
Pantone 7492U
Pantone 7492C
CMYK: 7/0/30/5
RGB: 216/220/143
HEX: #D8DC8F
Pantone 5807U
Pantone 5807C
CMYK: 5/0/25/0
RGB: 236/243/203
HEX: #ECF3CB
Accent Colors
Parent Project Muscular Dystrophy | 33
Subbrands
The PPMD identity system includes several subbrands for specific
programs. These logos should be treated according to the same
guidelines as the main PPMD logo. If you have questions about
proper use of these subbrands, or if you would like to request the
digital logo files, please contact us.
Run for Our
Sons logo:
End Duchenne
logos:
S.T.I.R. logo:
Duchenne
Connect
logo:
CoachToCureMD
logo:
34 | Participation Matters
Using photography
Incorporating photography can be an effective way to add life and
personality to print or online communications. Whenever possible,
full-color photographs are preferred over one-color, halftone, or
black-and-white photos, since they better reflect the vibrance of
PPMD’s mission.
Photos including wheelchairs or other mobility aids should be incorporated
when possible, to portray the realities of living with Duchenne. However,
photos should always reflect PPMD’s positive and thoughtful outlook,
and photos of young men in distress should be avoided. Photos that
focus in on the subjects’ faces and emotions or interestingly-cropped
detail photos are preferable to formal portraits or large group photos.
Please avoid using poorly-lit or unfocused snapshots, and never use
low-resolution web images for print. Photos for print should have a
resolution of at least 300 dpi (dots per inch) at their full print size.
Please use the photographs below for guidance and inspiration.
QUICK PHOTO TIPS
Taking compelling photographs
isn’t nearly as difficult as people
often think. Here are a few tips to
help you get started.
• G
et close. Your subject
is what’s interesting, so
focus on that and minimize
surrounding space. Don’t be
scared to crop your subject a
little to highlight what’s most
important (usually the face).
• A
void busy backgrounds. If
possible, position yourself so
there’s minimal activity going
on behind your subject.
• T
ake candids. People looking
directly at the camera make
nice portraits, but often a shot
of someone looking in another
direction or engaged in an
activity carries more emotional
and compositional interest.
• Get permission. Be sure
to get permission to use
photography from both
the photographer and the
subjects.
• U
se a photo credit when
using photography not
otherwise commercially
licensed for use.
• If you’d prefer not to shoot
your own photos, or if time
is an issue, there are many
websites that offer good,
reasonably-priced stock
photographs. Just be sure to
purchase the proper resolution
for your intended use. Sites to
try include:
www.istockphoto.com
www.stockxpert.com
us.fotolia.com
Parent Project Muscular Dystrophy | 35
Appendix
Pitch Letter to the Editor
Press Release
Auction Item Solicitation
| Participation Matters
Pitch Letter
to the Editor
[Editor or Reporter’s Name]
[Newspaper or other publication]
[Address ]
[City, State, Zip]
[Date]
USE THIS LETTER TO:
announce your event to local
press and request that they
cover it as a news story. Simply
replace the text in red with the
details of your event and send to
your city’s news outlets.
Dear [Editor or Reporter’s Name],
I am writing to suggest a story idea to raise awareness about a devastating,
little known disorder that affects 1 in 3,500 boys worldwide—including our son.
Despite its prevalence, not much is known about Duchenne muscular dystrophy
in our own neighborhoods and communities. Duchenne muscular dystrophy
is a progressive muscle disorder that causes loss of muscle function and
independence. To date, it has no cure. Our son, [your son’s name], was
diagnosed with Duchenne in [year of diagnosis], and we’ve become active
members of a nonprofit organization called Parent Project Muscular Dystrophy
(PPMD).
On [date of event], we are hosting a [type of event] to raise awareness of
Duchenne and raise funds for PPMD. Their mission is to end Duchenne. They
accelerate research, raise our voices in Washington, demand optimal care
for all young men, and educate the global community.
We ask that you consider covering our event. You could help your readers
gain invaluable information about Duchenne, which can affect any family in
our community. (Many Duchenne cases are the result of random, spontaneous
genetic mutation that can occur during any pregnancy regardless of family
history.) You’d also be giving your readers a great way to support our efforts
on behalf of PPMD.
Please help us in our fight to end Duchenne muscular dystrophy.
Sincerely,
[Your name]
[Your phone number]
[Your email]
P.S. A press release is available upon request.
Parent Project Muscular Dystrophy | 37
Press Release
USE THIS PRESS RELEASE TO:
distribute information about
your event and about Duchenne
and PPMD. Simply replace the
text in red with the details of
your event and send to your
city’s news outlets.
For Immediate Release: [Date]
Contact: [Your name, Phone, Email]
LOCAL FAMILY FIGHTS FOR A CAUSE CLOSE TO THEIR HEART AND HOME
[Your hometown] Family Hosts a [Type of event] to Raise Awareness and Funds for
Duchenne muscular dystrophy
(HOMETOWN, STATE) – [Your son’s age, spelled out] [your son’s full name] is
a fighter. (For example, “Five-year-old Brandon Smith is a fighter.”) And the
name of his toughest opponent is Duchenne muscular dystrophy (Duchenne).
When Brandon was [your son’s age of diagnosis], he was diagnosed with
Duchenne, a progressive muscle disorder that causes loss of muscle function and
independence. However, with the spirit of any good fighter, he lives life to the
fullest, surrounded by the love and support of his family and community.
On [event date], [your son’s name] family and friends will host a [type of event]
at [event location] to raise awareness of Duchenne, a little known and often
misunderstood genetic disorder, and to raise funds on behalf of Parent Project
Muscular Dystrophy (PPMD). PPMD is a national nonprofit organization started in
1994 by parents of young men diagnosed with Duchenne. The [your family’s name]
family is actively involved with PPMD and hopes to inspire the [your city/town’s
name] community to come out, have fun, and make a generous contribution in
support of [your son’s name] and PPMD.
(Use this or 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 full name]. “Our [type of 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.”
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle
strength. Parent Project Muscular Dystrophy’s mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by
Duchenne and in research that will benefit future generations. We advocate in
Washington, DC, and have secured hundreds of millions of dollars in funding.
We demand optimal care, and we strengthen, unite, and educate the global
Duchenne community.
38 | Participation Matters
Everything we do—and everything we have done since our founding in 1994
—helps boys with Duchenne live longer, stronger lives. We will not rest until
every young man has a treatment to end Duchenne.
Go to www.ParentProjectMD.org to learn how you can support our efforts
and help families affected by Duchenne.
IMPORTANT:
Be sure that you format
your press release correctly,
according to this model. And
don’t forget the ### at the
end—this lets the news agency
know they’ve received the
release in its entirety.
Interviews Available
[Your family’s name], Parent Project Muscular Dystrophy executive staff,
and experts on Duchenne muscular dystrophy are available for interviews.
Event listing details:
Who: [your family name & any other community partners]
What: [name of event]
Where: [address, intersection, location and directions, if needed]
When: [day, month, date, year, time frame]
Why: To raise awareness and money for Duchenne on behalf of PPMD
Additional info:
Parent Project Muscular Dystrophy | 39
Auction Item
Solicitation
[Contact’s Name]
[Company Name]
[Street Address]
[City, State, Zip]
[Date]
Dear [Contact’s Name]:
The [your family’s name] family, in collaboration with Parent Project Muscular
Dystrophy (PPMD), will hold a benefit dinner and auction to support muscular
dystrophy research and education.
In [year of diagnosis] our son, [son’s name], was diagnosed with Duchenne
muscular dystrophy (Duchenne). Duchenne is the most common, inherited,
lethal childhood disorder, affecting one in every 3,500 boys worldwide every
year. Duchenne is characterized by progressive muscle weakness, which results
in loss of muscle function. To date, there is no cure.
PPMD is a nonprofit organization founded in 1994 by parents of children
with Duchenne muscular dystrophy. Their mission is to end Duchenne. They
accelerate research, raise our voices in Washington, demand optimal care for
all young men, and educate the global community. For more information on
PPMD, please visit www.ParentProjectMD.org.
Our benefit dinner and auction will be held at [location of event with address]
on [date]. We expect over [estimated number] people to attend and bid on
auction items. Will you support our fight against Duchenne muscular dystrophy?
We invite you to participate in one or more of the following ways:
• Donate auction items [goods or services].
• M
ake a cash donation (to be used towards the purchase of needed items for
the dinner or auction).
• Attend the dinner auction.
40 | Participation Matters
If you are interested, please send your cash donation or auction items to
[name and address]. We would like to receive all gifts by [date]. We are also
happy to arrange pick-up of any item. Please keep in mind: your gift is tax
deductible. You will receive a letter and receipt from PPMD to be used for
tax purposes.
Thank you for considering our request. Feel free to call me at [###-###-####]
with any questions. Together we can end Duchenne.
Sincerely,
[Your name]
Parent Project Muscular Dystrophy | 41
Our Mission
Parent Project Muscular Dystrophy’s mission is to end Duchenne.
We accelerate research, raise our voices in Washington, demand
optimal care for all young men, and educate the global community.
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
T. 800.714.5437 • 201.944.9985
F. 201.944.9987 • info@ParentProjectMD.org
ParentProjectMD.org
PPMD Community Community.ParentProjectMD.org
Run For Our Sons RunForOurSons.org
Facebook Facebook.com/ParentProjectMD
Coach to Cure MD CoachToCureMD.org
Twitter Twitter.com/ParentProjectMD
Duchenne Connect DuchenneConnect.org
YouTube YouTube.com/ParentProjectMD