My advocacy efforts started very early on. It all started at the PPMD Annual Conference, when Dr. Lee Sweeney said “To improve lives of patients with Duchenne and Becker Muscular Dystrophy the real change would have to come from the government through the National Institute of Health. Awareness about Duchenne and Becker needs to be increased within the NIH community”. I did not know any one at the NIH so I decided to contact my Congressional representative. In 2000 it was Congresswoman Slaughter. She was interested in health issues and always supported the NIH. I naively phoned her Washington office and requested an appointment in the Rochester office. Her appointment scheduler was  gracious enough to set the appointment. I met with the Congresswoman and one of her Legislative Aides in the Rochester office. She listened to me talk about my son and talk about what it was like to have a son with DMD. I left her information about PPMD and what we were trying to accomplish. She was very kind. But, I did not know what the next step was. There was not any legislation for the MD Care Act, so I just kept emailing her office periodically to let her know how Jonathan was doing.

 

The first legislative conference in 2001 was to gain support of the MD Care Act. I traveled to Washington. I had no idea what to expect I had never lobbied congress. It seemed really grandiose. I knew, I needed to be Jonathan’s voice. I was really nervous and afraid of tripping over my tongue when it came to the talking points for the MD Care Act. All the people conducting and speaking at the training session were really young and smart. I was a 40 something Mom from upstate NY, talking about scientific issues and terms that I had trouble pronouncing. I was grateful to find out that I would not be attending the meetings on my own. The meeting schedule had been set for me. I was disappointed that I was not scheduled to meet with my representatives office. We had meetings with other representatives. We also meet with the Health Legislative Aides from both Senators offices. All those meetings went smoothly. I was hopeful that our elected officials from New York would help. After the meetings on the first day, there was a reception. Invitations went out to the offices inviting the members and the staff. It was really crowded and there were lots of people. As I passed through the crowd someone said, “Hey, Christine this person is looking for someone from New York”. I said, “I’m from New York”, whose office do you represent?” She said was from my representative’s. office. I was delighted; I proceeded to have my meeting with my representive’s Health Legislative Aid in the middle of the reception. My representative signed on to the MD Care act and signed on to the appropriations bill the next year in 2002.

 

In late 2002 the congressional districts were re-zoned. I had a new representative. I attended the 2003 Advocacy Conference. I did not have a meeting scheduled with either Senator’s office or with my Congressman’s office. I had meetings with lots of offices outside of my district. They went smoothly and for the most part were successful. I stopped by the Senate and my representative offices to leave information. I was able to meet with a Legislative Assistant in my representative’s office. She was interested, but made reference to my representative being a Cardinal on the house appropriations committee. I had no idea what she meant. She took the information and gave me a business card with the name and contact information of Health Legislative Aide. I came home to upstate NY. I followed up with everyone I met with during the 2003 conference. I especially followed up with both Senator’s offices and with my representative’s office. In 2004, I was unable to attend the Advocacy Conference due to a project going on at work. I kept up contact through voice messages and e-mail.

 

When I attended the 2005 Advocacy Conference, I had meetings scheduled with both NY Senator’s, as well as my Representative’s office. When the delegation met with the Senate offices both of their Health Legislative aides remembered my name and were delighted that we finally got to meet in person. Both Senator’s signed onto the appropriations letter.

 

We met with my Congressman’s office. The Congressman was a senior member of the influential House Appropriations Committee, which determines how much money goes to DMD programs. It was really important that we gained his support. The meeting was very successful. He signed on to the appropriations letter. His Health LA wanted my family to meet with him within in our district. My son Jonathan, my daughter Kathyn and I met with him in the Syracuse office. We were able to discuss Jonathan’s and Kathryn’s perspective about living with DMD. I was able to thank the Congressman for his support in person. I was also able to discuss PPMD's specific federal funding request and its impact on the Muscular Dystrophy Center of Excellence at the University of Rochester as well as the CDC surveillance project that is collecting critical information on muscular dystrophy in western New York.

 

My relationships continued with these offices and Health Legislative Aides through the 2008. In 2008 NY had a new senator and my district had a new representative. I was able to build a relationship with my new representative and gain his support. Jon was also able to meet with him at the Model United Conference in Syracuse. We have a new congress for 2011. This year I have the same Senator’s and a new Representative. I can’t attend the conference this year. But I will be diligent in educating congress about Duchenne and Becker Muscular Dystrophy via voice mail and email.

 

Advocacy really does matter!  Click to hear Pat Furlong and PPMD's Board Chairman talk about advocacy.

 

Please click here to read about PPMD's advocacy history.

 

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