When people hear the words muscular dystrophy, they think of the annual Muscular Dystrophy Association’s Labor Day Telethon.  This is what came to my mind when my son was diagnosed with Duchenne Muscular Dystrophy in 1999 at the age of three.  I had never heard of Duchenne, so I did my research, called the MDA for guidance, then called family and friends.  I expected understanding.  I expected someone would fix it.  I even expected someone would tell me it was a mistake.  I was stunned at how my life had changed in a second, how it became so surreal.  We felt alone and struggled with acceptance.  There was no cure, no treatment, and no standard of care.  Needing to do something, we knocked on doors and raised more than $900 for the MDA.  We relished our success, yet knew it was a drop in the bucket. 

Two years later in 2001, still thirsting for information, I went to a conference put on by Parent Project Muscular Dystrophy.  Parent Project was started by and for parents of children who have Duchenne and Becker’s, a milder but related form of muscular dystrophy.  It was overwhelming, but I needed to be there to not let the disease defeat me.  I networked with parents and professionals; heard the research, treatment and care updates; and found the support I craved.  I was awed at the level of expertise in the room.  I was awed that professionals were awed by me.  That same year, President Bush signed the MD CARE Act into law.  Among other things, the Act authorizes childhood muscular dystrophy activities at the National Institutes of Health (NIH) and the Centers for Disease Control (CDC).  I attended the Parent Project conference again in 2004 and learned there was a reason to have HOPE.  Stem cells and gene therapies were making progress, and there was development of a new drug that has potential to read through a “stop codon” mutation, the same kind responsible for my son’s condition.  It was obvious that continued genetic research will require money.  Not bake sale money, but big federal money.  Wanting to be part of the solution, it was time to learn to be an advocate.  If not me, who? 

Each March, Parent Project holds an advocacy conference in Washington D.C. to encourage and teach parents to share their story with members of Congress in the hope of increasing federal money for research, outreach and education.  In 2005 it was my turn to go.   I flew out of Burlington on a Sunday morning with trepidation and excitement.  I was thrilled to see another Vermont mom, Jenn Zoller, waiting for me when I landed.  At the hotel, while scanning for familiar faces, we heard words of hope and encouragement from Pat Furlong, founder of Parent Project.  A full day was planned:  three hours of scientific updates from researchers and an additional three hours of advocacy training with professional lobbyists.  During the latter session, we discussed past successes on the Hill, memorized this year’s appropriations request, planned our family stories and role-played the congressional meeting.  The requests, simply put, would be additional funding at the NIH, CDC, and at the Department of Defense’s muscle wasting research facility.  We received our individual itineraries of scheduled meetings and off we went.  I barely slept, as I was processing the day and anticipating what was ahead.     

At nine o’clock Monday morning, after being briefed by the lobbyists and a legislative aide, we armed ourselves with our packets and hit the streets.  It must have been a scene, the seventy some parents, the lobbyists and other supporters loading onto the Metro to Capital Hill.  There were parents from California to Maine, Florida to Washington ready to put a face on Duchenne.  We had four meetings planned the first day, a Congressional Reception at 5:00, then dinner out with the entire cadre of parents and organizers.  As we were paired with a Washington advocate, our first meeting was with Washington Representative Jay Inslee’s Legislative Assistant to Healthcare issues.  It went extremely well, better than I expected.  The person we spoke with was engaging and interested.  With our confidence up, we headed to Representative Sanders office, where again we were met warmly.  We thanked the office for past support, as Bernie was 1 of 68 Representatives who supported our requests last year.  We shared our family stories, discussed our issues, thanked them for their time and went on our way.  It was amazing.  After lunch, we went Senator Murray’s (WA) office.  After the meeting, we were rewarded with praise by our lobbyist escort.  Apparently we were a good team.  Our final meeting of the day was with Senator Jeffords.  We were again warmly welcomed and felt lucky to be thanking him for his past support (I love Vermont!), as he was 1 of 15 Senators that signed our Appropriations Request letter last year.  Rather than concerning himself with statistics and dollars, he savored the pictures we brought of our children posing in the Vermont landscape.  We were guaranteed of his continued support.  I felt honored sitting in his office.  Next, it was on to the Congressional Reception and finally on to dinner.  Exhausted and in my room by 10:30 p.m., it was another restless night, with visions of the day dancing in my head.  I looked forward to the Grande coffee I would treat myself to at Starbucks in the morning.       

We awoke on Tuesday to a Noreaster, and as Jenn and I still had one more meeting at Senator Leahy’s office, we grabbed a cab, rather than contend with the Metro and walking.  The office was beautifully decorated with art from Vermont.  We were met by Senator Leahy’s Legislative Assistant to Healthcare who immediately put any doubt out of our minds regarding the Senator’s past and continued support of additional funding to support muscular dystrophy activities at the federal level.  He enthusiastically supports, we were told, continued and additional NIH funding.  Feeling satisfied with our success, we grabbed a cab back to the hotel, where we said our goodbyes, vowed to come again next year, then hustled to the airport, hoping our flights weren’t cancelled.  I made it back to Burlington, where my family was waiting with open arms.  I didn’t want to let them go, yet I couldn’t wait to be home, where I could relax and share my experience.  With the trip behind me, what I wanted next, was finally attainable . . . sleep.

You can learn more about the Muscular Dystrophy Association at www.mdausa.org and about Parent Project Muscular Dystrophy at www.parentprojectmd.org.