Grandparents and Advocacy

Anita Bullers and enjoyed meeting many of you at the PPMD 2011 Annual Meeting last June in Baltimore at the Grandparents and Duchenne Workshop. We discussed how grandparents play a powerful part on many levels. We also exchanged emails in hopes of communicating issues specifically related to grandparents and exchanged email addresses. There are many things we can do.

This discussion is to encourage you to help with the 2012 ADVOCACY effort and this can be done in Washington, DC or right from your home.
The dates for Advocacy are February 26-28, 2012 (Sunday through Tuesday) -- just 2-1/2 weeks away.
This applies whether you are or aren't coming to Washington. There is a lot of detail so I've tried to simplify it so as not to overwhelm you.

POINT #1: Please respond to the four items below (reply to this email) as soon as possible.
POINT #2: Consider sharing your personal story.

1. Your name and names/ages of grandchild(ren) with Duchenne. Please include location of all (city and state).
2. If you are coming to Washington, when will you be arriving and departing? Would you like to meet with other grandparents as a group for a catch-up meeting and perhaps share a meal while we are there? Anita and I will be there and will share details later.
3. Could you to help us reach out to other Duchenne families in your district/state that may not be active in PPMD or coming to Washington to encourage them to add their name and perhaps *share their stories (see below) when we advocate next month? Those of us making the trip to Washington will be dropping of packets to districts/states not represented. If the packets contain information about an actual constituent this will greatly enhance our chances for support.
4. Could you encourage other friends/relatives/acquaintances to contact their Congress reps either/or in their home districts, by phone/mail in the interest of helping our boys? Clear instructions will be provided. I am going to do this by going through my address book and outreach to people all over the country. A few minutes of their time could mean years of a quality lifetime for our boys.

What is it like to live with Duchenne and how has it affected us?

The most powerful part of asking for funding from Congress is sharing our personal stories. We need to communicate briefly and clearly what Duchenne is and what it entails. Duchenne is a lonely world because so many people have never heard of it. I never did. It is up to us to spread this AWARENESS because if they don't know about it they can't help.
How to share your story: If you need some help in writing your story there is help available so that it can be communicated quickly and powerfully on a one-page flyer along with a photograph.

This is found on the (Advocacy) GET ACTIVE page on the PPMD Website (once you get there you have to scroll down):
Personal Story on a One Page Flyer:
One of our advocates with graphic design/journalism skills has volunteered to convert your personal story/photograph(s) into a concise one-page flyer (as time allows). Flyers are effective when communicating with Congress and for leaving in the PPMD packets. They serve as a reminder at-a-glance of our mission and increase Duchenne awareness. If you would like a customized flyer that clearly communicates your story, please contact Gail McVicker at
You will also find a sample flyer (PDF file) in this location and I have attached one below -- the wording and layout can be customized for you and the age/stage of your grandchild. It can be tailored to be from your viewpoint or from that of the child's parents. If you would like some help please email me at -- we can work together and do all of this on-line or by phone in short order.
Previously, there has been a severe shortage of states represented when we advocate in Washington, DC. Some years we have barely had one-third of our 50 states represented. To do something about this, PPMD has come up with a 50 STATE CHALLENGE which means a massive effort to reach out to as many people as we can to encourage them to contact their Congress rep. We want to have all 50 states represented along with as many districts as possible. Because many cannot make the trip to Washington, effective advocating can be done in home districts and by email/phone.
Grandparents are in a perfect position to help make this a success.
Thank you for taking time to read all of this -- any questions or confusion please let me know.
If you can, please take a few short minutes to reply to the four items above and also please consider having your person story shared. We only have 2-1/2 weeks.

Two grandsons with Duchenne ages 8 and 5.

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