Myasthenia Gravis Foundation of America
2012 PUBLIC RELATIONS TOOLKIT
National Office  355 Lexington Avenue, 15th Floor  New York, NY 10017  Phone: (800) 541-5454  (212) 297-2156
Fax: (212) 370-9047  E-mail: mgfa@myasthenia.org  Web site: www.myasthenia.org
February 10, 2016
Dear Chapter Leaders,
We are pleased to present the 2011 Public Relations Toolkit. This new initiative will provide you with the tools,
tips and information to promote MGFA and your chapter throughout the year. Similar to the MG Awareness
Month Toolkit for June (which is also included in this document), the goal of this expanded kit is to provide
education and outreach tactics which will increase familiarity with Myasthenia Gravis and the needs of patients;
promote early diagnosis and treatment; as well as increase awareness of the mission of the MGFA and its chapters
in its efforts to find a cure.
With the helpful news hook of June as MG Awareness Month and other local activities, providing a reason to reach
out to the press, efforts can be as simple as sending out a press release or as involved as implementing a public
relations mini-campaign in your local market that includes several of the elements listed in this Tool Kit. Utilizing
June Awareness and other events and newsworthy information are great news hooks all year long.
The enclosed MG Awareness materials are designed for ease of use at the local level. Included in this media kit is
“foundation” collateral – including a template press release, Case Statement, Fact Sheets and FAQs. Also included
are targeted press lists (including print, television and radio outlets) for your local area or market for ease of use in
reaching out to your local media contacts, plus lists of state and municipal governments.
Sample or template “pitch letters” have been included for approaching various media outlets for coverage
(articles), public service announcements and requesting proclamations from state and local government. In
addition, in most sections, we have included a Best Practices area to help guide you in your efforts.
*NEW! Two new sections have been added:


How to create a “news engine” or a steady drum beat of news, all year long – to both the long-lead and short
lead news outlets in your area.
“Bring MG to Light” – Reaching out to local city buildings and monuments to be lit in blue for MG Awareness
Month for one (or more) nights in June.
If you have any questions about the media kit, please contact the National Office at 800-541-5454 or
mgfa@myasthenia.org.
Sincerely,
Tor Holton
Chief Executive, MGFA
MGFA Communications Committee
Janet Myder, Chair
Judy Bodner
Jennifer Faucett
Nancy Kuntz, MD
Esther Land
Steve Merusi
Dr. Robert Ruff
Marilyn Ricci
Dr. Zaeem Siddiqi
Jurgen Venitz, MD
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TABLE OF CONTENTS
PR: A Year-Long Event
Sample News Engine/ Media Outreach Timeline
How to Communicate With the Media
Get a story in print
Get a story on TV
Talking Points
Tips for an Interview
How to get a PSA Placed
Press Release (sample)
PSA Cover Letter – TV (sample)
PSA Cover Letter – Newspaper/Magazine (sample)
PSA Cover Letter – Radio (sample)
PSA Radio Script
Foundation Materials and important lists:
MGFA Case Statement
FAQs
Facts about MG
How to Use Social Networking for Media
Facebook
Twitter
June Awareness Tool Kit
Order of Action for Initiatives
Press Release (sample)
Print Pitch Letter (sample)
TV Pitch Letter (sample)
“Bring MG to Light”
Sample list of buildings/monuments which can be lit
Sample request letter
How to Request a Proclamation
Proclamation Request and Format
State and Local Government Contacts
Local Press Contacts
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Attached
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PUBLIC RELATIONS TOOL KIT: A YEAR LONG EVENT
Public relations is a year-long activity to keep your organization in the eye of the media, as well as the audience. By
keeping on their radar, media will be more likely to come back to you when they are creating stories that they
believe would benefit from the input of your organization.
News Engine
To establish greater awareness to any cause or brand, an aggressive, ongoing effort is required to gain traction
with media, influencers and key change agents. A marathon rather than a sprint, this sustained effort is necessary
because, in today’s oversaturated, multimedia society:

A person may need to see the cause or brand several times before it resonates in a meaningful way. This can
be especially true when a person has limited prior exposure to it.

It is vital to be on the radar of your local media, as you want them to think of you as a resource.

The media itself gravitates towards health and medical stories that pose the most ominous threat to the
largest number of people.
An effective way to counter these factors is to build what we call a News Engine. The function of this News Engine
is to create a steady drumbeat of MGFA–related information that is regularly disseminated to the media and key
influencers. A strong News Engine is active all twelve months per year, to proactively seed media and society’s
collective consciousness with news, facts, updates, statistics, key findings, etc. about the disease, targeting
difference audiences month by month.
Local events and applicable Foundation Focus stories would be terrific News Engine content as they serve to
personify hope, triumph, and determination in our family, friends and neighbors.
To ensure that a broad variety of media is engaged, the News Engine would be broken out into short lead and long
lead story angles, with pitching conducted appropriately in advance of target media deadlines. A sample News
Engine calendar might look something like the following. Please note that this is a broad example and not
customized – you would want to customize to your market and your needs.
Of course, special emphasis would be placed on June, Myasthenia Gravis awareness month, for which media
outreach should commence in January/February to ensure that deadlines are met for those outlets with the
longest lead times.


Long lead = monthly magazines
Short lead = newspapers, websites, TV and radio
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SAMPLE NEWS ENGINE
January
February
March
Topic / Long Lead:
 Mother’s Day Miracles
Inspiring moms inherent to each.
Topic / Long Lead:
 MG Awareness Month
 Father’s Day
Topic / Long Lead:
 TBD
Timing: May-June issues
Timing: June-July issues
Potential Long Lead Media Targets:
 Local monthly magazines (i.e.
Philadelphia magazine)

Timing: July-August issues
Topics / Short Lead:
 Local events
 Any medical advances or new
studies
Timing: Jan-Feb issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs
weekly magazines, TV
April
Topic / Long Lead:
 Summer events
Timing: Aug-Sept issues
Potential Long Lead Media Targets:
Local monthly magazines
Topic / Short Lead:
 Local events
 Valentine’s Day
Potential Long Lead Media Targets:
 Local monthly magazines
Topics / Short Lead:
 Local events
 Spring
Timing: March-April issues
Timing: Feb-March issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs, weekly
magazines, TV
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
May
June
Topic / Long Lead:
 Flu Season
 Back to school/stories about kids with
MG
Topics / Long Lead:
 Holiday Season:
 Thanksgiving
Timing: Oct-Nov issues
Potential Long Lead Media Targets:
 Local monthly magazines
Topics / Short Lead:
 Local events
 Any new medical updates, studies,
etc.
Timing: April-May issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
Timing: Sept-Oct issues
Potential Long Lead Media Targets:
 Local monthly magazines
Topics / Short Lead:
 June Awareness
 Mother’s Day
 Memorial Day
Timing: May-June issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs, weekly
magazines, TV
Potential Long Lead Media Targets:
 Local monthly magazines
Topics: / Short Lead:
 June Awareness
 Father’s Day,
 Local events
 Out of School: Keeping the Kids
Happy with Keeping Up Your
Strength
Timing: June-July issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
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July
August
September
Topic / Long Lead:
 Giving back/fundraising
 Holiday/stories of inspiration
Topic / Long Lead:
New Year’s Celebrations
New Year’s Resolutions
Topic / Long Lead:
Valentine’s Day
Timing: November, December issues
Timing: December, January issues
Potential Long Lead Media Targets:
 Local monthly magazines
Potential Long Lead Media Targets:
 Local monthly magazines
Topic / Short Lead:
 Summer Stories
 Any new medical updates, studies,
etc.
Timing: July-Aug issues
Topic / Short Lead:
 Local events
 Back to school; stories of kids with MG
Topic / Short Lead:
 Back to school; stories of kids with
MG
Timing: Aug-Sept issues
Timing: Sept-Oct issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
Potential Short Lead Media Targets:
Local newspapers, radio, blogs, weekly
magazines, TV
Potential Short Lead Media Targets:
Local newspapers, radio, blogs, weekly
magazines, TV
October
November
December
Topic / Long Lead:
 Stories tied to spring (events,
announcements)
Topic / Long Lead:
 TBD
Topic / Long Lead:
 Stories tied to Mother’s Day (a
mother’s inspiration)
Timing: February issues
Potential Long Lead Media Targets:
 Local monthly magazines
Outreach: April issues
Outreach: March issues
Topic / Short Lead:
 Halloween
 Local events
Outreach:May issues
Topic / Short Lead:
 Giving back, fundraising initiatives
Topic / Short Lead:
 Giving back, fundraising initiatives
Timing: Nov-Dec issues
Timing: December issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs, weekly
magazines, TV
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
Timing: Oct-Nov issues
Potential Short Lead Media Targets:
 Local newspapers, radio, blogs,
weekly magazines, TV
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JUNE AWARENESS MEDIA TOOL KIT
The publicity tools included in the following pages can be used to develop and execute a PR plan for your chapter
for June Awareness Month. We have also provided the following templates which speak directly about this special
month, but it is up to each chapter to fill in what you are doing on the local level – that is what is relevant to the
news media in your area.
ORDER OF ACTION FOR EACH INITIATIVE
(Timeline of when the following initiatives should take place)
IMMEDIATE – JUNE
 PSA Outreach
 Proclamation Requests
 Planning of Local Chapter Activities in June
 Media outreach to long-lead news outlets – monthly magazines (start in Jan-March)
 Reach out for building lightings in your area (start in Jan-March)
MAY – JUNE
 Media outreach to short-lead mews outlets – newspapers, weekly magazines, blogs, TV, radio
JUNE


Local Chapter Activities Held
Continue All of the Above
HOW TO COMMUNICATE WITH THE MEDIA
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The MGFA increases awareness for Myasthenia Gravis using various media sources. MGFA Chapters can also help in
these efforts throughout the year and during MG Awareness Month to bring a more local and personal public
awareness (i.e. local MG stories, testimonials, medical histories, fundraisers…) using local media resources (and using
local MG patients) to reach as large an audience as possible. Please contact the National Office for assistance with any
of the following:
I.
GET A STORY IN PRINT:
How to use the Print Pitch Template:
 Download and save the press release to your computer
 Fill in the personal contact information including your name, community, e-mail, phone number, etc. as well as
other relevant information (what your chapter is doing/promoting).
 Reach out to local newspapers/magazines in your area by using the local press list provided
 Send this in the last 2-3 weeks before an event and a few days in advance to help increase visibility in your
community
 For any “newsworthy” announcements (other than events), a press release may be sent a few days or the day of
the official announcement.
Best Practices and Pitching Help:
Story “Hooks” to Increase Media Interest:
 Tell them what/when your chapter is doing to promote MG Awareness (fundraisers, walk-a-thons, etc), any events
open to the public, etc. – Invite them to these events
 Offer them local MG patients or local MG medical experts to interview/speak about MG
 Check to see what recent articles the reporter may have covered so you can relate to them – to do this, you can go
to the newspaper’s website and search for the reporter’s name for recent stories they have covered.
Sending via E-mail:
 Send your emails early in the morning, reporters are too busy to pay attention from noon – on as they are on
deadline for their current stories.
 It is always best to personalize your email with the reporters name and the name of their publication, so they
know you are speaking to them. If you chose to send a pitch email/press release to multiple people– make sure
you use the BCC (blind carbon copy) feature on your e-mail so they do not see the others you are contacting. If
BCC’ing – do not include “Dear x” –instead, use the greeting “Good morning” or Good afternoon.”
 We’ve provided a sample cover or “pitch letter” for your convenience. Place letter in the body of your e-mail. If
sending via e-mail, remove the date and the contact’s information at the top of the page (start with Dear x).
Sending via Fax:
 If sending a fax to pitch the media, include the cover letter in the body of the fax cover. The following pages for the
fax would be the Press Release.
Following Up:
 Follow up with the person you sent the email/fax to with a phone call approximately 1-2 days after you e-mailed
them. Best times to call are in the morning. Be courteous and brief as they are always on deadline. It is helpful to
ask them if they have a moment to speak, and offer to call back if they are on deadline.
 It’s possible they won’t recall the email, so tell them about the contents and ask if you could send it again.
 When you speak with them, offer to send them additional information or a press kit (folder with the press release,
fact sheet and FAQ, plus additional chapter brochures, etc).
** Remember – you are there to help them!
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Print - Now that you have an interview set up, what do you do?
A)
Provide news source/interviewer with MGFA Case Statement & information. You want to be sure that
the interviewer has the best, most up-to-date information about the disease and the Foundation. You should
provide them with the MGFA Case Statement (they will call it a “Backgrounder”) found within this media kit, as
well as copies of MGFA’s brochures see: www.myasthenia.org/pe_informationalmaterials.cfm
B)
Be prepared with “message points” as well as “talking points” specific to your chapter. Your message
points are the top 3-4 things you want expressed to the reader. They should be short and concise talk points –
generally once sentence each. Also, the local journalists and readers are going to be interested in finding out
about local resources and activities. By making your answers specific to the area and the chapter, you can help to
make the segment more relevant to the reader.
C)
Ask if the interviewer could share their questions or “scope” of the interview in advance to allow for
preparation. They may not agree to this, but if so, it will help you greatly in crafting your responses in advance.
Below you will find suggested “talking points” and answers (In TV Section)
II.
GET A STORY ON TV:
How to use the TV Pitch Template:
 Download and save the press release to your computer
 Fill in the personal contact information including your name, community, e-mail, phone number, etc.
 Reach out to local TV/broadcast stations in your area by using the local press list provided
 Send this in the last week before and the morning of your event to help increase visibility in your community. (TV
works with short deadlines – they only focus on things happening in the very near future)
Best Practices and Pitching Help:
Story “Hooks” to Increase Media Interest:
 Tell them what/when your chapter is doing for MG Awareness activities (fundraisers, walk-a-thons, etc.), any
events open to the public, etc. – Invite them to these events.
 Offer them local MG patients or local MG medical experts to speak about MG
Sending Via E-mail:
 Send your emails 2 hours before or after the air time of the show you are pitching.
 It is always best to personalize your email with the producers name and the name of their network, so they know
you are speaking to them. If you chose to send a pitch email/press release to multiple people– make sure you use
the BCC (blind carbon copy) feature on your e-mail so they do not see the others you are contacting. If BCC’ing –
do not include “Dear x” –instead, use the greeting “Good morning” or Good afternoon.”
 We’ve provided a sample cover or pitch letter for your convenience. Place letter in the body of your e-mail.
Remove the date and the contact’s information at the top of the page (start with Dear x).
Sending via Fax:
 If sending a fax to pitch the media, include the cover letter in the body of the fax cover. The Following pages would
be the Press Release.
Following Up:
 Follow up with the person you sent the e-mail/fax to with a phone call approximately 1-2 days after you emailed
them. Never call an hour before the show or during the show. Be courteous and brief as they are always on
deadline. It is helpful to ask them if they have a moment to speak, and offer to call back if they are on deadline.
 It’s possible they won’t recall the email, so tell them about the contents and ask if you could send it again. – Or
they may direct you to someone else in the newsroom to send it to. Send it to the new person and repeat the
above steps.
** Remember – you are there to help them!
9
TV - Now that you have an interview set up, what do you do?
A)
Provide the news source/interviewer with “talking points.” – Again 3-4 concise messages you want them
to convey. The station will be appreciative that you have provided them with a listing of questions that cover those
aspects of the disease that are most likely to be of interest to the general public. It also helps you to control the
discussion. Several points that you should be sure to cover are below:
1. What is Myasthenia Gravis?
2. Who gets MG?
3. What are the common symptoms?
4. Are there treatments?
5. What are the key points of the event or announcement you want the audience to know?
6. Where can people go to find out more information about the disease, its treatment, and mutual support?
7. What can viewers do to help?
B)
Provide the news source/interviewer with MGFA logo and materials. Use visual aids demonstrations in
your segment. Visuals, when used appropriately, can enhance viewers’ understanding and pique their interest.
Always check with the person booking your segment if you can bring materials with you to the filming.
C)
Provide news source/interviewer MGFA Fact Sheet & information. You want to be sure that the
interviewer has the best, most up-to-date information about the disease and the Foundation. You should provide
them with the MGFA Case Statement found within this media kit, as well as copies of MGFA’s disease brochures
(see www.myasthenia.org/pe_informationalmaterials.cfm).
D)
Prepare answers to the “talking points” specific to your chapter. The local viewers are going to be
interested in finding out about local resources and activities. By making your answers specific to the area and the
chapter, you can help to make the segment more relevant to the audience.
TALKING POINTS
Below you will find the answers to the “talking points” suggested above.
1. What is Myasthenia Gravis?
MG is an autoimmune neuromuscular disease that affects the voluntary muscles of an individual. The
immune system attacks the receptors on the muscle at the neuromuscular junction which limits the ability
for the muscle to receive the signal from the nerve to work. As a result, the individual with MG
experiences fluctuating muscle weakness.
2.
Who gets MG?
Anyone can get MG but it is not communicable. Young & old, male & female and all races can have MG.
3.
What are the common symptoms?
Myasthenia gravis means “grave muscle weakness.” Symptoms include weakness in muscles that control
eye movements and eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements,
and breathing. MG strikes people of all ages, races, and genders. There is no known cure for MG, but
there are effective treatments.
4.
Are there treatments?
There is no cure but MG has treatments. Many medications are used to suppress the immune system.
There is a medication to increase the chances for the muscle to get the message from the nerve. There is
a surgery that can be performed called a thymectomy. IVIG is used to flood the body with “good” donor
antibodies and plasmapheresis cleanses the blood of “bad” antibodies.
5.
Key points of the event/announcement?
TBD based on your event
6.
Where can people go to find out more information about the disease, its treatment, and mutual support?
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People may go to: www.myasthenia.org or call the national number for the Myasthenia Gravis Foundation
of America at 1-800-541-5454. [Include additional information about the local chapter, for example “The
local chapter can be reached at …. The local chapter maintains regular support group meetings. For
information, contact ….”]
7.
E)
What can viewers do to help?
Audience may donate money for research, education and patient support directly to the chapter or the
national office (donations can be made via mail or the national website at
www.myasthenia.org/hcih_donations.cfm). They can volunteer as a chapter or national board member, or
attend a local fundraising or awareness event. They can also help to educate themselves and their
friends, family and neighbors about the disease.
Prepare for the Camera: In addition to the Do’s & Don’ts below, here are some tips for being on camera.
It is completely natural to be a little bit nervous about being on TV. Here are some things to keep in mind:
 Just ignore those silly cameras! Think of your appearance as having a friendly chat with the host(s) in
their home.
 Have fun, be informative, and be animated and expressive. This is your moment to shine, so go for it!
Smile, communicate your message and prepare what you will be talking about ahead of time.
F)
Dressing for the Show: Avoid wearing white clothes, (they tend to wash out on camera) tight patterned
fabrics (they tend to make the picture flutter), or flashy jewelry on camera. Solid and darker colors are
usually the best choice. Green can sometimes be an issue with a green screen, so try to avoid green, as
well. (The part of you that is wearing green will “disappear!”)
Stations generally advise that guests should avoid shorter skirts, shorts or turtlenecks. Because the microphones
used in TV broadcasts are very sensitive, loose jewelry around the neck or wrist might make noise when you move
and may need to be removed. Items with MGFA’s logo can usually be worn during the interview. Lastly, remember
that your footwear might be seen on camera too.
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HELPFUL TIPS FOR YOUR MEDIA INTERVIEW
THE DO’S

Always stay on message in an interview. Everything that you say should reiterate your message points.

Talk in “sound bites” – clear, precise statements that emphasize your message clearly and quickly.

Offer viewers/readers information where they can learn more (Web site or phone number).

Use analogies, data and sound bites to back up your message points.

For phone interviews, step away from your office. Go into a neutral space with no e-mail and no phone. Have
your message points typed up on a piece of paper in front of you.

For television interviews, sit halfway into your chair and pitch forward. If you are wearing a jacket or suit coat,
sit on the seat of your jacket if possible. This will help it from bunching around your shoulders. Show
enthusiasm, make eye contact and use your hands. Convey to the reporter that there is no place else you’d
rather be than at that interview.

Use the full range of your voice. Vary your volume, pitch and pace.
THE DON’TS

Never say “no comment.” If you can’t comment, explain why (i.e. the case is under litigation, or you’re looking
for the answer and will get back to the reporter).

Never speak “off the record.” Everything you say to the media is on the record.

Never repeat a negative question or comment that a reporter makes.

Never use jargon. Use simple terms and brief explanations.

Never go into an interview without knowing what quote you want to see on tonight’s newscast or in
tomorrow’s papers.

Don’t go overboard. When communicating with the media, stick to your main message points.
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III. GET A PSA:
How to ask for PSA “Space”:
Each media source has a very visible contact person who handles PSAs (Public Service Announcements). Many
PSAs are provided for free, so please also push this avenue, as all of these sources have the experience to make
this work for us. A PSA script; sample cover letters requesting placement of an MG PSA for radio, print and TV
outlets; and a sample press release are available within this MG Awareness media kit.
TV PSA
How to use the TV PSAs and Cover Letter:
 MGFA has produced two PSAs for your use (30 and 60 second PSAs) which can be found at
www.myasthenia.org
 Copies will be sent to TV stations upon your request – please let us know the format THEY request
 We have provided a PSA cover letter for your use, please download and fill out the forms where shown
 Reach out to local TV stations in your area by using the local press list provided – you will want to contact the
Public Affairs Department, Community Affairs Department, Public Service Department, etc. You may be
redirected to a show producer.
 Send this ASAP as well as during the month of June to help increase visibility in your community
Best Practices and Pitching Help:
Sending via E-mail:
 If sending an e-mail out to multiple people – make sure you use the BCC (blind carbon copy) feature on your email so they do not see the others you are contacting. If BCC’ing – do not include “Dear x” – instead, use the
greeting “Good morning” or Good afternoon”
 Include the cover letter in the body of the e-mail. Include the PSA script as an attachment.
Sending via Fax:
 If sending a fax, include the cover letter in the body of the fax cover. The next pages would be the PSA script
and a Fact Sheet.
Following Up:
 Follow-up with your contact 1 to 2 days after sending the e-mail/fax via phone
 Be prepared with information regarding MG and MG Awareness Month, as they may immediately ask you
questions regarding the e-mail you sent
 Always mention you are calling from a foundation, regarding PSAs for non-profits
 They may not recall receiving the e-mail, so offer to re-send it and continue the follow-up process again
RADIO PSA
How to use the Radio PSA Script and Cover Letter:
 Enclosed in this kit you will find a sample script for a radio PSA, as well as a cover letter to request placement.
 Download and save the file to your computer
 Reach out to local radio stations in your area by using the local press list provided – you will want to contact
the Public Affairs Department, Community Affairs Department, Public Service Department, etc.. The
receptionist can also put you in touch with the correct person if the aforementioned titles do not apply.
 Send this ASAP as well as during the month of June to help increase visibility in your community
Best Practices and Pitching Help:
Sending via E-mail:
 If sending an e-mail out to multiple people – make sure you use the BCC (blind carbon copy) feature on your email so they do not see the others you are contacting. If BCC’ing – do not include “Dear x” – instead, use the
greeting “Good morning” or Good afternoon”
 Include the cover letter in body of the e-mail. Include the script as an attachment
13
Sending via Fax:
 If sending a fax, include the cover letter in the body of the fax cover. The next pages would be the PSA script
and a Fact Sheet
Following Up:
 Follow-up with your contact 1 to 2 days after sending the e-mail/fax

Be prepared with information regarding MG and MG Awareness Month, as they may immediately ask you
questions regarding the e-mail you sent

Always mention you are calling from a foundation, regarding PSAs for non-profits

They may not recall receiving the e-mail, so offer to re-send it and continue the follow-up process again
PRINT PSA
How to use the Print PSA and Cover Letter:
 Enclosed in this kit you will find a cover letter to request placement. The print PSA (the MG Awareness Poster
in ready-to-print format), will be sent electronically to each chapter by April 15.
 Download and save the file to your computer
 Reach out to local newspapers and magazines in your area by using the local press list provided – you will
want to contact the Public Announcements, Production Manager, Ad Sales Department, etc. The receptionist
can also put you in touch with the correct person if the aforementioned titles do not apply.
 Send this ASAP as well as during the month of June to help increase visibility in your community
Best Practices and Pitching Help:
Sending via E-mail:
 If sending an e-mail out to multiple people – make sure you use the BCC (blind carbon copy) feature on your email so they do not see the others you are contacting. If BCC’ing – do not include “Dear x” – instead, use the
greeting “Good morning” or Good afternoon”
 Include the cover letter in body of the e-mail. Include the PSA script as an attachment
Following Up:
 Follow-up with your contact 1 to 2 days after sending the e-mail

Be prepared with information regarding MG and MG Awareness Month, as they may immediately ask you
questions regarding the e-mail you sent

Always mention you are calling from a foundation, regarding PSAs for non-profits

They may not recall receiving the e-mail, so offer to re-send it and continue the follow-up process again
14
FOR IMMEDIATE RELEASE
CONTACT:
NAME
T:
E:
NEWS HEADLINE
City, State (Month, Day, 2011) –[Insert name of your chapter] announces [event or initiatives and date of
event or initiative]. Myasthenia Gravis (MG) is an often misunderstood and under-diagnosed disease,
which strikes people of all ages, races, and genders. Currently, there is no known cure, but are treatments
to assist those affected.
The goals of this [event] are to [x,y,z.]
MG is an autoimmune neuromuscular disease that affects voluntary muscles. Myasthenia gravis means
“grave muscle weakness.” Symptoms include weakness in muscles that control eye movements and
eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements, and breathing. The
prevalence of MG is thought to be much higher than the approximate 70,000 Americans affected by the
condition. As a rare disease, it is frequently under-diagnosed due to symptoms similar to other disorders.
[If event open to public, include information and/or ticket sales info here, as well as contact info –website,
phone number]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated
solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis
and closely related diseases, improving treatment options and providing information and support to people with myasthenia
gravis through research, education, community programs, and advocacy. MGFA has 20 chapters in the United States serving
patients, their families and caregivers through support groups and educational programs. For more information, please visit
http://www.myasthenia.org.
###
15
[PSA COVER LETTER FOR TV – SAMPLE]
Date
[Media Contact Name]
[Name of Publication]
[Address 1]
[Address 2]
Dear [Contact Name],
I'm writing on behalf of the Myasthenia Gravis Foundation of America, the only national organization
dedicated solely to the fight against the debilitating disease, myasthenia gravis (MG). This June marks MG
Awareness Month.
MG is a serious autoimmune, neuromuscular disease that affects the health and quality of life of the people it
strikes. Please help us raise awareness this June as we are “Uniting for a Cure… Together we are
Stronger.” For your consideration, we would like to offer our PSA (approximately 30 seconds and another at
60 seconds) to you, designed to raise awareness about the disease and to issue a call to action to learn more whether patients, caregivers, or supporting public. The PSA is available in many formats, including Mini DV,
Beta and DVD. You can view the PSA online as well, at www.mysathenia.org
Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms,
legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue.
Currently, there is no cure for MG, but there are effective treatments.
MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment
options and provide information and support to people with myasthenia gravis through research, education,
community programs and advocacy.
As the leader of our community’s chapter of the Myasthenia Gravis Foundation of America, I am asking for
your support of our goal to increase awareness of the disease. Please contact me for more information if you
are interested in pursuing this avenue. Below is some additional information about MGFA and the chapter
serving this area.
I appreciate your time and consideration. I will call you shortly to follow-up. In the meantime, I can be
contacted at [insert phone number].
Sincerely,
[Your Name]
[Title]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health
agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to
finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing
information and support to people with myasthenia gravis through research, education, community programs, and
advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support
groups and educational programs. For more information, please visit http://www.myasthenia.org/
16
[PSA COVER LETTER FOR NEWSPAPER/MAGAZINE - SAMPLE]
Date
[Media Contact Name]
[Name of Publication]
[Address 1]
[Address 2]
Dear [Contact Name],
I'm writing on behalf of the Myasthenia Gravis Foundation of America, the only national organization
dedicated solely to the fight against the debilitating disease, myasthenia gravis (MG). This June marks MG
Awareness Month.
MG is a serious autoimmune, neuromuscular disease that affects the health and quality of life of the people it
strikes. Please help us raise awareness this June as we are “Uniting for a Cure… Together we are
Stronger.” For your consideration, enclosed is our PSA, designed to raise awareness about the disease and to
issue a call to action to learn more - whether patients, caregivers or supporting public.
Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms,
legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue.
Currently, there is no cure for MG, but there are effective treatments.
MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment
options and provide information and support to people with myasthenia gravis through research, education,
community programs and advocacy.
As the leader of our community’s chapter of the Myasthenia Gravis Foundation of America, I am asking for
your support of our goal to increase awareness of the disease. Please contact me for more information if you
are interested in pursuing this avenue. Below is some additional information about MGFA and the chapter
serving this area.
I appreciate your time and consideration. I will call you shortly to follow-up. In the meantime, I can be
contacted at [insert phone number].
Sincerely,
[Your Name]
[Title]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health
agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to
finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing
information and support to people with myasthenia gravis through research, education, community programs, and
advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support
groups and educational programs. For more information, please visit http://www.myasthenia.org/
17
[PSA COVER LETTER FOR RADIO - SAMPLE]
Date
[Media Contact Name]
[Name of Publication]
[Address 1]
[Address 2]
Dear [Contact Name],
I'm writing on behalf of the Myasthenia Gravis Foundation of America, the only national organization
dedicated solely to the fight against the debilitating disease, myasthenia gravis (MG). This June marks MG
Awareness Month.
MG is a serious autoimmune, neuromuscular disease that affects the health and quality of life of the people it
strikes. Please help us raise awareness this June as we are “Uniting for a Cure… Together we are
Stronger.” For your consideration, included is our PSA script, designed to raise awareness about the disease
and to issue a call to action to learn more - whether patients, caregivers, or supporting public.
Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms,
legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue.
Currently, there is no cure for MG, but there are effective treatments.
MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment
options and provide information and support to people with myasthenia gravis through research, education,
community programs and advocacy.
As the leader of our community’s chapter of the Myasthenia Gravis Foundation of America, I am asking for
your support of our goal to increase awareness of the disease. Please contact me for more information if you
are interested in pursuing this avenue. Below is some additional information about MGFA and the chapter
serving this area.
I appreciate your time and consideration. I will call you shortly to follow-up. In the meantime, I can be
contacted at [insert phone number].
Sincerely,
[Your Name]
[Title]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health
agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to
finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing
information and support to people with myasthenia gravis through research, education, community programs, and
advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support
groups and educational programs. For more information, please visit http://www.myasthenia.org/
18
[RADIO SCRIPT - PUBLIC SERVICE ANNOUNCEMENT – SAMPLE]
MYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC.
PUBLIC SERVICE ANNOUNCEMENT
:40 SECONDS
CONTACT:
Myasthenia Gravis Foundation of America, Inc.
TELEPHONE:
1.800.541.5454
June is Myasthenia Gravis Awareness Month. Approximately 70,000 Americans have been diagnosed
with the debilitating disease, myasthenia gravis. However, its prevalence is thought to be much higher
because MG is not well known and its symptoms may be mistaken for those of other diseases.
Myasthenia gravis (pronounced mi-uhs-THE-ne-uh GRA-vis) means “grave muscle weakness.”
Symptoms include weakness in muscles that control eye movements and eyelids, chewing, swallowing,
coughing, facial expressions, arm and leg movements, and breathing. MG strikes people of all ages, races,
and genders. There is no known cure for MG, but there are effective treatments.
June is Myasthenia Gravis Awareness Month. You can help spread awareness by educating yourself
and others about MG. Find out more by visiting The Myasthenia Gravis Foundation of America at
www.LearnAboutMG.org.
19
Who We Are:
The Myasthenia Gravis Foundation of America is committed to finding a cure for myasthenia gravis and closely related
disorders, improving treatment options and providing information and support to people with myasthenia gravis through
research, education, community programs, and advocacy. We are the only national organization solely dedicated to fighting
this insidious and often misunderstood disease.
What is Myasthenia Gravis?
Myasthenia gravis (MG) literally means “grave muscle weakness.” It is a serious, potentially life threatening, neuromuscular,
autoimmune disease which causes severe weakness in the voluntary muscles of the body. MG strikes both children and
adults, and can affect a person’s ability to see, speak, walk, smile, eat--and at its worst, even draw a breath. MG saps
strength, can erode abilities and hopes, halt a career, and unravel the fabric of families.
History:
In 1952, after a doctor diagnosed her daughter, Patricia, with MG, Jane Dewey Ellsworth became determined to find all the
information she could about this strange disease. She found very little information and few to turn to for help. Vowing to
change the lack of information available, she founded MGFA with the mission to have “A World without MG.” The
organization provided patients and families with the information and support needed to understand and cope with MG.
What We Do:
Research: Years ago, most people with MG died from the disease. Since our inception in 1952, the Foundation has led the
charge to ensure investments in the world’s most promising scientific endeavors—funding research and bringing together
the brightest minds in the field from around the world at scientific seminars. Research has led to better diagnostic
techniques, treatments and therapies, and improved disease management, such that death from MG has become rare. But
today’s treatments come with significant side effects, and are only partially effective in managing the life-altering symptoms
of MG. More research is needed to find better therapies, and ultimately, a cure and a world without MG.
Programs, Services and Public Awareness: Even with medical advances, people with MG often find little initial
understanding from family, friends and even their health care providers as they experience mysterious and sometimes
terrifying symptoms — often for years before receiving a diagnosis. Through our nationwide network of chapters and
international partners, the Myasthenia Gravis Foundation of America helps people to understand the disease and cope with
the impact of MG on quality of life, family, and employment. We provide ongoing education to help medical professionals
and the general public to better understand this often misdiagnosed disease.
The Need:
Until the world is free of MG, the Myasthenia Gravis Foundation of America will not rest. We rely on the generosity of our
donors and many hours contributed by dedicated volunteers to achieve our mission. Myasthenia gravis takes people’s
strength. With your help, we can give it back.
www.myasthenia.org
20
Frequently Asked Questions
What is myasthenia gravis and what are common symptoms?
Myasthenia gravis (MG) is an autoimmune neuromuscular disease that affects voluntary muscles. Myasthenia gravis means
“grave muscle weakness.” Symptoms include weakness in muscles that control eye movements and eyelids, chewing,
swallowing, coughing, facial expressions, arm and leg movements, and breathing. The weakness tends to increase with
continued activity and can be improved with periods of rest. Not everyone will display all symptoms and symptoms can
fluctuate. MG strikes people of all ages, races, and genders. There is no known cure for MG, but there are effective
treatments.
How is MG treated?
There is no known cure for MG, but there are effective treatments that allow many people with MG to lead full lives.
Common treatments include various medications and surgeries. Spontaneous improvement and even remission may occur
without specific therapy. Rest and a well-balanced diet can help.
How do patients contract MG?
Often, the cause of MG contraction is not known for the particular patient. Researchers are uncertain of the cause of MG,
but do not believe that it is hereditary. A genetic predisposition to autoimmune diseases can run in families, but MG is not
thought to be directly hereditary. Additionally, researchers do not believe that it is contagious.
How many people have MG?
Approximately 70,000 individuals in the U.S. have been diagnosed with MG. However, MG is considered under-diagnosed
and the prevalence is thought to be much higher.
At what age do most patients get MG?
MG can occur in patients of any age, however, the most common age at onset is the second and third decades in women
and the seventh and eighth decades in men. As the population ages, the average age at onset increases correspondingly;
now males are more often affected than females, and the onset of symptoms is usually after age 50.
Where can I get more information on MG?
The Myasthenia Gravis Foundation of America (MGFA) produces and distributes informational pamphlets about MG. These
materials describe various aspects of the illness, information on treatment programs and a number of other selected topics.
Find out more at www.myasthenia.org or 800.541.5454.
Are there local support groups?
MGFA has 20 chapters throughout the country. Local chapters have information on support groups in various areas.
21
Facts About Myasthenia Gravis
1.
Myasthenia Gravis (MG) is a chronic neuromuscular, autoimmune disease that causes varying degrees of
weakness involving the voluntary muscles of the body
2.
Directly translated, myasthenia gravis means “grave muscle weakness”
3.
This disease occurs in people of all races, genders, and at any age
4.
Approximately 70,000 individuals in the U.S. have been diagnosed with MG – though due to the under
diagnosis, it is believed the number is actually much greater
5.
MG may affect any voluntary muscle, but most commonly affects those that control eye movements and
eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements, and breathing
6.
Common symptoms of MG can include:
a. Drooping eyelids
b. Blurred or double vision
c. Slurred speech
d. Difficulty chewing and swallowing
e. Weakness in the arms and legs
f. Chronic muscle fatigue
g. Difficulty breathing
7.
There are a variety of different tests that can be completed to diagnose a patient with MG
8.
Researchers do not believe that MG is directly inherited nor is it contagious, although it can occasionally
occur in more than one member of the same family
9.
There are some effective treatments, through medicines and surgeries, that allow many MG patients to
lead full lives with significant improvement in their muscle weakness
10. Currently, there is no known cure for MG
22
SOCIAL NETWORKING: WHY IT’S IMPORTANT FOR YOUR CHAPTER
AND HOW TO USE IT
As more and more people use social media platforms to learn about new causes, we would suggest that MGFA chapters create
their own or build onto their current Facebook page and begin to friend key influencers and reporters in the media. By
friending these preselected reporters and working to establish relationships with them, these applications become yet another
way to develop the Foundation, mission, and brand awareness that would not otherwise exist.
Twitter is also an effective method of engaging people with the most up to date information available. We’d encourage your
chapter designate one person to be responsible for tweeting on a weekly or bi-weekly basis to keep information fresh and
more likely to have people “follow.” These social media platforms are an important way to capture a younger audience as they
have become a primary mode of communication for them.
Each chapter must also maintain its Facebook page and begin regular engagement with its Facebook page, giving regular
updates, snippets of news, etc. – linked to the News Engine to drive continual interest in the latest local happenings – in the
world of the myasthenia gravis community.
Facebook (www.facebook.com)
How to Create a Facebook Fan Page
A Facebook Page is a public profile that enables you to share your chapter, events and news with Facebook users. With your
fan page you can share photos, share news, let fans of your page see upcoming events you have scheduled and much
more.
1.
Go to the area on Facebook where you can begin to create a fan page. Select the “Ads and Pages” from the
navigation menu in the left column
2.
Hit the “+ Create Page” button
3.
Select a category that you want your Facebook fan page to be a part of. Then give your fan page a name, check
the box that reads, “I am authorized to create this page” and finally enter in your full name as a signature.
4.
Finally click the “Create Page” button. After it is submitted your page will be created and you will then be taken
to an area where you can customize your fan page with photos, information and so on.
How to Create a Facebook Event
From sit-a-thons, walk-a-thons, picnic/outings and anything your chapter plans throughout the year or for June Awareness
Month, you can organize and publicize any event using Facebook. As a social utility and networking Website, Facebook makes a
great platform for hosting and building your events.
1.
Log in to the Facebook home page with the e-mail address and password that you registered with
2.
Select “My Events” from the navigation menu in the left column Step 2
3.
Hit the “+ Create Event” button
4.
Fill in all the details about your event, including the time and place. You can always edit these later, but try to
get as much detail in as you can initially.
5.
Choose the level of access to your event. If the event is open, anyone can see the details and add himself or
herself to the guest list. If the event is closed, only the time and description is shown to uninvited guests.
Facebook users can request to be added to the guest list for complete event info. A secret event will not appear
in search results and will only be viewable by those people you invite.
6.
Click “Create Event” to complete your event details.
7.
Upload a photo that represents the event. Use the browse feature to find a photo on your hard drive to upload.
A good option is a photo from last year’s event or the MGFA logo
8.
Invite guests. Select your friends on Facebook and other users to attend your event. You can even send e-mails
to people not on Facebook. After you invite people, you are done creating your event.
23
Twitter (www.twitter.com)
How to Create a Twitter Account
Twitter is a social networking/blogging site that allows you to update your personal blog and communicate with your online
friends via 140-maximum character messages, or "tweets," that describe chapter events, news, etc. In order to
effectively use twitter and gain followers, it is recommended to “tweet” every few hours.
1.
Go to the Twitter homepage and click on the “Sign Up Now” button
2.
Create a username and password. Twitter will automatically check the availability of your username. Once you
find one that is unique, enter your email address and continue.
3.
After you create your account, you can manually see if any of your e-mail contacts are on Twitter. Just enter
your e-mail username and password, and twitter will automatically import anyone it recognizes.
24
FOR IMMEDIATE RELEASE
CONTACT:
TBD
T:
E:
CITY/CHAPTER SUPPORTS
MYASTHENIA GRAVIS AWARENESS MONTH
National Campaign: Uniting For a Cure of Rare Disease
City, State (Month, Day, 2011) –[Governor/mayor’s name proclaims, June is Myasthenia Gravis
Awareness Month]. June 2011 marks the eleventh annual “MG Awareness Month,” a nationwide
movement created by the Myasthenia Gravis Foundation of America, Inc. (MGFA) to raise awareness of
the often misunderstood and under-diagnosed disease, Myasthenia Gravis (MG). MG strikes people of all
ages, races, and genders and there is no known cure.
[Insert name of your chapter] is working to bring attention to MG Awareness Month by [X, Y and Z
events or initiatives].
MG is an autoimmune neuromuscular disease that affects voluntary muscles. Myasthenia gravis means
“grave muscle weakness.” Symptoms include weakness in muscles that control eye movements and
eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements, and breathing. The
prevalence of MG is thought to be much higher than the approximate 70,000 Americans affected by the
condition. As a rare disease, it is frequently under-diagnosed due to symptoms similar to other disorders.
The campaign theme, “Uniting for a Cure: Together we are Stronger,” is a call to action to patients, the
medical community and advocates to come together to eradicate MG. The goals of this campaign are to
promote an understanding of the scope of this disease, and to further MGFA’s mission in providing
information and support to people with MG through research, education, community programs, and
advocacy. A key priority for MGFA is to raise funds for research to find a cure and improve treatments
for those with this disease.
To learn more about MG and how you may help, visit www.myasthenia.org or call [chapter telephone
number]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated
solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis
and closely related diseases, improving treatment options and providing information and support to people with myasthenia
gravis through research, education, community programs, and advocacy. MGFA has 20 chapters in the United States serving
patients, their families and caregivers through support groups and educational programs. For more information, please visit
http://www.myasthenia.org.
###
25
[SAMPLE PITCH LETTER – NEWSPAPER/MAGAZINE]
Date
[Media Contact Name]
[Name of Publication]
[Address 1]
[Address 2]
Dear [Contact Name],
I hope you are well. This June is MG Awareness Month. MG, or myasthenia gravis, means “grave
muscle weakness,” and is a debilitating disease, affecting people of all ages, races, and genders. Currently
there is no cure for MG. Symptoms include weakness in vision, movement, breathing, chewing and
swallowing.
The city MGFA chapter is planning a variety of events to bring attention to MG Awareness Month,
including: [insert events or activities your chapter is doing – especially if open to the public]. [Also
include if you have a person with MG or a medical expert they can speak with about MG]
Our campaign “Uniting for a Cure… Together we are Stronger” is a national initiative to help increase
awareness for this serious disease. As the leader of our community’s chapter of the Myasthenia Gravis
Foundation of America (MGFA), I am asking for your support to help increase awareness of this disease.
For your consideration, included, please find a press release with more information regarding MG and
MG Awareness Month. Please let me know if I may send you any additional information or if you have
any questions. I will call you shortly to follow-up. In the meantime, I can be contacted at [insert phone
number].
Sincerely,
[Your Name]
[Title]
[Phone Number]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health
agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to
finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing
information and support to people with myasthenia gravis through research, education, community programs, and
advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support
groups and educational programs. For more information, please visit http://www.myasthenia.org/
26
[SAMPLE PITCH LETTER – TELEVISION]
Date
[Media Contact Name]
[Name of Publication]
[Address 1]
[Address 2]
Dear [Contact Name],
I hope you are well. This June is MG Awareness Month. MG, or myasthenia gravis, means “grave
muscle weakness,” and is a debilitating neuromuscular disease, affecting people of all ages, races, and
genders. Currently there is no cure for MG. Symptoms include weakness in vision, movement, breathing,
chewing and swallowing.
The city MGFA chapter is planning a variety of events to bring attention to MG Awareness Month,
including: [insert events or activities your chapter is doing – especially if open to the public]. [Also
include if you have a person with MG or a medical expert they can speak with about MG
Our campaign “Uniting for a Cure… Together we are Stronger” is a national initiative to help increase
awareness for this serious disease. As the leader of our community’s chapter of the Myasthenia Gravis
Foundation of America (MGFA), I am asking for your support to help increase awareness of this disease.
For your consideration, included, please find a press release with more information regarding MG and
MG Awareness Month. Please let me know if I may send you any additional information or if you have
any questions. I will call you shortly to follow-up. In the meantime, I can be contacted at [insert phone
number].
Sincerely,
[Your Name]
[Title]
[Phone Number]
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health
agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to
finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing
information and support to people with myasthenia gravis through research, education, community programs, and
advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support
groups and educational programs. For more information, please visit http://www.myasthenia.org/
27
BRING MG TO LIGHT INITIATIVE
The local awareness effort for MG Awareness Month can include lighting buildings and monuments blue during a
night(s) in June (blue is the official color of the MGFA). It will be important to ensure that the media are aware of
all lighting events in advance and are provided with the appropriate materials and resources to encourage them to
cover the story.
How to light in blue
Different buildings and monuments present different challenges for lighting. Below you will find easy steps to
assist you in requesting and organizing a lighting:








Step 1: Identify the iconic building or monument that you would like to light in blue.
Step 2: Identify the person who can grant permission to light the building or monument and the person
who is technically responsible for lightings.
Step 3: Tailor a draft letter provided below to suit your situation.
Step 4: Provide the reasons why the building should light in blue to mark MG Awareness Month
Step 5: Send your lighting request to your chosen location and, if possible, follow up with a phone call.
Step 6: If your request is approved, ask for the technical specifications.
Step 7: Identify any costs – Often monuments are able to light in blue for free. Sometimes, however,
charges may be incurred. Regretfully, MGFA does not have the resources to support your lighting
financially.
Step 8: Capture print quality photos or a video of your lighting. You should share the images of your
lighting immediately with the local media and the public.
SAMPLE BUILDING LIGHTING LOCATIONS:




















The Austonian, Austin, TX
GSD&M Idea City, Austin, TX
Bob Bullock Museum, Austin, TX
Capitol Tower, Austin, TX
The Monarch, Austin, TX
One Congress Plaza, Austin, TX
The Domain, Austin, TX
Chase Tower, Austin, TX
Radisson, Austin, TX
One American Center, Austin, TX
Long Center for the Performing Arts, Austin, TX
Austin Galleries, Austin, TX
Whole Foods Market, Austin, TX
Opal Devine's, Austin, TX
Cooper University Hospital, Camden, NJ
The Capitol, Carson City, NV
Fifth Third Bank Tower, Cincinnati, OH
Clifton City Hall, Clifton, NJ
D & F Clock Tower, Denver, CO
Kenneth Walker Hall, Edison State College, Ft. Myers, FL




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Century Tower, University of Florida, Gainsville, FL
Lacks Cancer Center, Saint Mary's Health Care, Grand
Rapids, MI
Federal Building, Suffolk County Executive, Hauppauge, NY
Euphemia, Longboat Key, FL
Boston Scientific, Maple Grove, MN
Empire State Building, New York, NY
The UN Building, New York, NY
Boston Scientific Headquarters, Natick, MA
State Capitol Dome , Oklahoma City, OK
State Capitol, Raleigh, NC
Municpal Plaza Building, San Antonio, TX
Metreon, San Francisco, CA
Herald Tribune, Sarasota, FL
The Community Foundation of Sarasota County, Sarasota, FL
University of South Florida Sarasota-Manatee, Sarasota, FL
YMCA of Sarasota - Evalyn Sadlier Jones Branch, Sarasota, FL
YMCA of Sarasota - Frank G. Berlin Sr. Branch, Sarasota, FL
Civil Courts Building, St. Louis, MI
Bryce Jordan Center, University Park, PA
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[SAMPLE LETTER - MONUMENTS AND BUILDINGS]
(Date)
(Name of official and address block)
Dear (Name of official)
I am writing to you on behalf of (Organization Name) to request your support and authorization to light
up buildings as well as (name of well known local landmark/s or monument/s) in blue during one night(s)
this June to mark MG Awareness Month.
MG, or myasthenia gravis, means “grave muscle weakness,” and is a debilitating disease, affecting people
of all ages, races, and genders. Currently there is no cure for MG. Symptoms include weakness in vision,
movement, breathing, chewing and swallowing.
The (your chapter) is planning a variety of events to bring attention to MG Awareness Month, including:
[insert events or activities your chapter is doing – especially if open to the public].
Our campaign “Uniting for a Cure… Together we are Stronger” is a national initiative to help increase
awareness for this serious disease. As the leader of our community’s chapter of the Myasthenia Gravis
Foundation of America (MGFA), I am asking for your support to help increase awareness of this disease.
This year we hope to encourage iconic buildings and monuments to light up and would like include your
(name of city halls and/or other landmark).
We hope you will support the campaign and look forward to your reply.
Respectfully,
(your name, chapter)
HOW TO REQUEST A PROCLAMATION
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What is a proclamation?
A proclamation is a formal way to make a public announcement. Mayors, council members, or local government
administrators write proclamations to commend people or to announce upcoming events.
One way to increase MG Awareness in your area is through local and state-wide proclamations of June as MG Awareness
Month. It’s easier than you might think; included below are step-by-step directions. Please make sure to share your
successes with MGFA by forwarding a copy of the signed proclamation to the National Office.
How to use this Template:

Download and save this file to your computer

Fill in the personal information including your name, community, etc.

Identify and reach out to local government officials as soon as possible, as some governmental
bodies may take anywhere from a few weeks to a few months to reach a decision.
Steps in Requesting a Proclamation:
1.
Identify the appropriate contact person in your state and local government. Governmental office web pages will provide
address, telephone and e-mail information. You can use www.globalindex.com to locate web pages for cities and
towns, or http://www.usa.gov/Contact/Governors.shtml to locate contact information on Governors. Additionally, a
contact list broken down by state is available through the national office.
2.
3.
Telephone contact with the administrative offices is recommended to determine exactly how, when
and to whom you should make your request. Many state Web sites have a proclamation request link for you to submit
your request electronically or download forms.
Send your request in writing unless they ask for it by e-mail or fax. Use appropriate forms if provided. Telephone
requests are not recommended. Include suggested wording for the proclamation (a sample proclamation is included
within this media kit). Also include a myasthenia gravis overview (you can use the Case Statement) and a
contact/business card with your name and chapter telephone number.
4.
In your request, specify a date that you want to receive the proclamation by so that it is processed in a timely manner.
You want your proclamations early enough to provide you with time to publicize them to your membership and to use
them to garner publicity in local outlets.
5.
If you are requesting proclamations from many towns or cities in your state, you may want to enlist chapter members
who live in those locales to assist you. They may have local contacts who can expedite the process. It also encourages
your membership to get involved.
6.
You may receive your proclamation by mail or be requested to pick it up personally. Once you receive the
proclamations, double check them for accuracy.
7.
Send out a thank you letter to any government officials who provide proclamations. This will ensure that future
requests proceed more smoothly.
8.
Forward a copy of your signed proclamation to the National Office to share your success!
Best Practices - How to Publicize Your Proclamation:

Ask to pick up the proclamation personally. Have your photo taken with the clerk or the mayor’s representative with
the proclamation.
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Ask the Mayor’s office to put your proclamation presentation event on their calendar.
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In the best case scenario, the Mayor’s office will write a press release of their own, distributing to their usual outlets.
Ask if this is done and if you could help facilitate that process.

Include the news of the proclamation in the press release provided, with photographs of the presentation, with the
purpose to get articles in your local papers.
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[PROCLAMATION REQUEST AND FORMAT –SAMPLE]
Contact:
Myasthenia Gravis Foundation of America, Inc.
355 Lexington Avenue 15th Floor
Toll free: 800.541.5454
Fax: 212.370.9047
[April/May] XX, 2012
TO:
Board of Selectmen
Town of: __________________
OR:
Mayor
City of: ______________________
The Myasthenia Gravis Foundation of America, Inc. (MGFA) is pleased to designate June as
Myasthenia Gravis Awareness Month. The 2011 theme is “Uniting for a Cure… Together we are
Stronger.” Please join with other municipalities in issuing a proclamation for Myasthenia
Gravis Awareness Month in your [town, city, or state]. Attached is a sample proclamation that
is being declared in several other communities nationwide. Thank you for your attention to this
important matter.
Local contact: ______________________________
Name
__________________________
Phone number
Proclamation
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City of ____________/ Town of ______________/ State of ________
WHEREAS, Myasthenia Gravis (MG) is a rare, often misdiagnosed, autoimmune,
neuromuscular disease that causes weakness of the voluntary muscles. Although
controllable by medication and other treatments, it can be fatal; and
WHEREAS, because of its rarity (approximately 70,000 people are living with MG in the
United States today), many Americans are often undiagnosed; and
WHEREAS, the Myasthenia Gravis Foundation of America, Inc. (MGFA) is a not-for-profit
organization founded in 1952; and
WHEREAS, the MGFA has a network of chapters throughout the United States whose mission
is to facilitate the timely diagnosis and optimal care of individuals affected by
myasthenia gravis and to improve their lives through programs of patient services,
public information, medical research, professional education, advocacy and
patient care.
NOW, THEREFORE, BE IT RESOLVED that I, _____________________, Mayor of the
City of /Chairman, Board of Selectmen of the Town of/Governor of the State of
________________________, do hereby proclaim June 2011, as:
MYASTHENIA GRAVIS AWARENESS MONTH
“Uniting for a Cure… Together we are Stronger.”
in the City/Town/State of _____________________ and urge all residents to join with me,
during the period, in an attempt to focus attention on the need for education, treatment, research,
and ultimately a cure for this as yet incurable disease.
IN WITNESS WHEREOF, I hereunto set my hand and cause the Seal of the City of/Town
of/State of ____________________, to be affixed this _______ day of ___________ in the year
of our Lord, Two Thousand Ten.
_____________________________
Mayor/Chairman, Board of Selectmen
STATE AND LOCAL GOVERNMENT CONTACT INFORMATION
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Alabama
Governor http://www.governor.state.al.us/contact.htm
Towns and Cities http://www.globalindex.com/comindex/al/index.shtml
Alaska
Governor http://gov.state.ak.us/govmailSP.php
Towns and Cities http://www.globalindex.com/comindex/ak/index.shtml
Arizona
Governor http://azgovernor.gov/Contact.asp
Towns and Cities http://www.globalindex.com/comindex/az/index.shtml
Arkansas
Governor http://www.governor.arkansas.gov/contacts.html
Towns and Cities http://www.globalindex.com/comindex/ar/index.shtml
California
Governor http://gov.ca.gov/
Towns and Cities http://www.globalindex.com/comindex/comm_cal/index.shtml
Colorado
Governor http://www.colorado.gov/governor/contact.html
Towns and Cities http://www.globalindex.com/comindex/co/index.shtml
Connecticut
Governor http://www.ct.gov/governorrell/site/default.asp
Towns and Cities http://www.globalindex.com/comindex/ct/index.shtml
Delaware
Governor http://www.state.de.us/governor/index.shtml
Towns and Cities http://www.globalindex.com/comindex/de/index.shtml
Florida
Governor http://www.flgov.com/gov_contact
Towns and Cities http://www.globalindex.com/comindex/fl/index.shtml
Georgia
Governor http://www.gov.state.ga.us/contact_dom.shtml
Towns and Cities http://www.globalindex.com/comindex/ga/index.shtml
Hawaii
Governor http://www.hawaii.gov/gov/contact/
Towns and Cities http://www.globalindex.com/comindex/hi/index.shtml
Idaho
Governor http://gov.idaho.gov/ourgov/contact.html
Towns and Cities http://www.globalindex.com/comindex/id/index.shtml
Illinois
Governor http://www.illinois.gov/gov/contactthegovernor.cfm
Towns and Cities http://www.globalindex.com/comindex/il/index.shtml
Indiana
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Governor http://www.in.gov/gov/contact/index.html
Towns and Cities http://www.globalindex.com/comindex/in/index.shtml
Iowa
Governor http://www.governor.iowa.gov/administration/contact/
Towns and Cities http://www.globalindex.com/comindex/ia/index.shtml
Kansas
Governor http://governor.ks.gov/contact.htm
Towns and Cities http://www.globalindex.com/comindex/ks/index.shtml
Kentucky
Governor http://governor.ky.gov/contact.htm
Towns and Cities http://www.globalindex.com/comindex/ky/index.shtml
Louisiana
Governor http://www.gov.state.la.us/index
Towns and Cities http://www.globalindex.com/comindex/la/index.shtml
Maine
Governor http://www.state.me.us/governor/baldacci/contact/index.html
Towns and Cities http://www.globalindex.com/comindex/me/index.shtml
Maryland
Governor http://www.governor.maryland.gov/index.html
Towns and Cities http://www.globalindex.com/comindex/md/index.shtml
Massachusetts
Governor http://www.mass.gov/?pageID=mg2homepage&L=1&L0=Home&sid=massgov2
Towns and Cities http://www.globalindex.com/comindex/ma/index.shtml
Michigan
Governor http://www.michigan.gov/gov/0,1607,7-168-21995-65280--,00.html
Towns and Cities http://www.globalindex.com/comindex/mi/index.shtml
Minnesota
Governor http://www.governor.state.mn.us/contacts/index.htm
Towns and Cities http://www.globalindex.com/comindex/mn/index.shtm
Mississippi
Governor http://www.governorbarbour.com/contact/
Towns and Cities http://globalindex.com/comindex/ms/index.shtml
Missouri
Governor http://www.gov.mo.gov/contacts.htm
Towns and Cities http://globalindex.com/comindex/mo/index.shtml
Montana
Governor http://governor.mt.gov/governor/welcome.asp
Towns and Cities http://globalindex.com/comindex/mt/index.shtml
Nebraska
34
Governor http://www.gov.state.ne.us/contact/
Towns and Cities http://globalindex.com/comindex/ne/index.shtml
Nevada
Governor http://gov.state.nv.us/
Towns and Cities http://globalindex.com/comindex/nv/index.shtml
New Hampshire
Governor http://www.nh.gov/governor/contactus.htm
Towns and Cities http://globalindex.com/comindex/nh/index.shtml
New Jersey
Governor http://www.state.nj.us/governor/govmail.html
Towns and Cities http://globalindex.com/comindex/nj/index.shtml
New Mexico
Governor http://www.governor.state.nm.us/contact.php?mm=6
Towns and Cities http://globalindex.com/comindex/nm/index.shtml
New York
Governor http://www.state.ny.us/governor/contact/index.html
Towns and Cities http://globalindex.com/comindex/ny/index.shtml
North Carolina
Governor http://www.governor.state.nc.us/Contact.asp
Towns and Cities http://globalindex.com/comindex/nc/index.shtml
North Dakota
Governor http://www.governor.state.nd.us/contact.html
Towns and Cities http://globalindex.com/comindex/nd/index.shtml
Ohio
Governor http://www.governor.ohio.gov/Contacts/tabid/69/Default.aspx
Towns and Cities http://globalindex.com/comindex/oh/index.shtml
Oklahoma
Governor http://www.gov.ok.gov/contact.php
Towns and Cities http://globalindex.com/comindex/ok/index.shtml
Oregon
Governor http://governor.oregon.gov/Gov/contact_us.shtml
Towns and Cities http://globalindex.com/comindex/or/index.shtml
Pennsylvania
Governor http://www.governor.state.pa.us/governor/site/default.asp
Towns and Cities http://globalindex.com/comindex/pa/index.shtml
Rhode Island
Governor http://www.governor.ri.gov/contact/
Towns and Cities http://globalindex.com/comindex/ri/index.shtml
South Carolina
Governor http://www.scgovernor.com/Contact.asp?sitecontentid=33
35
Towns and Cities http://globalindex.com/comindex/sc/index.shtml
South Dakota
Governor http://www.state.sd.us/governor/
Towns and Cities http://globalindex.com/comindex/sd/index.shtml
Tennessee
Governor http://www.tennesseeanytime.org/governor/Contact.do
Towns and Cities http://globalindex.com/comindex/tn/index.shtml
Texas
Governor http://www.governor.state.tx.us/contact
Towns and Cities http://globalindex.com/comindex/tx/index.shtml
Utah
Governor http://www.utah.gov/governor/contact.html
Towns and Cities http://globalindex.com/comindex/ut/index.shtml
Vermont
Governor http://www.vermont.gov/governor/contact.html
Towns and Cities http://globalindex.com/comindex/vt/index.shtml
Virginia
Governor http://www.governor.virginia.gov/Contact.cfm
Towns and Cities http://globalindex.com/comindex/va/index.shtml
Washington
Governor http://www.governor.wa.gov/contact/default.asp
Towns and Cities http://globalindex.com/comindex/wa/index.shtml
Washington D.C.
Governor http://dc.gov/contact/index.shtm
Towns and Cities http://globalindex.com/comindex/dc/index.shtml
West Virginia
Governor http://www.wvgov.org/
Towns and Cities http://globalindex.com/comindex/wv/index.shtml
Wisconsin
Governor http://www.wisgov.state.wi.us/contact.asp
Towns and Cities http://globalindex.com/comindex/wi/index.shtml
Wyoming
Governor http://wyoming.gov/governor/contactgovernor.asp
Towns and Cities http://globalindex.com/comindex/wy/index.shtml
36