In February I had the opportunity and pleasure of traveling to Washington DC and attending Rare Disease Week. Rare Disease Week is an annual multiday event hosted by the Everylife Foundation that is always held on, or close to, Rare Disease Day (last day of February). During Rare Disease Week patients and advocates from around the country have the opportunity to meet and network with others, learn more about becoming an effective advocate, hear about how other rare disease organizations are moving forward in connecting and supporting one another while pursuing a cure or better treatment options, and meet with their representatives and senators with specific asks (what we would like them to do) for their rare disease.
There is some variation from year to year as the event grows in content and attendance. Some of the highlights from my trip this year included a documentary screening called Tin Soldiers, a full day of seminars which helped me learn how to tell my story and articulate my asks, a chance to share and educate so many people about MSUD, and of course a chance to meet with the people within government that are in a position to help make a difference in our lives.
This year I spent my time and energy advocating for the Newborn Screening Saves Lives Reauthorization Act, the Medical Nutrition Equity Act, and asking my representatives to join the Rare Disease Congressional Caucus. Each of these bills has or could have a huge impact on our community. For me, Newborn Screening allowed us to get a timely diagnosis of MSUD in my newborn daughter, allowing her to begin treatment in a timely manner. The Medical Nutrition Equity Act would allow all families, in every U.S. state regardless of age/gender/ socioeconomic situation, to have access to life saving medical foods and formula. Finally, the rare disease congressional caucus allows congresspeople and senators to be in touch with the needs of the rare disease community. This is a big step in showing their partnership and commitment to us.
I was so grateful for the chance to represent MSUD alongside so many other rare disease advocates and patients. Never in my wildest dreams did I ever think I’d be equipped to do this or have the chance to, but I’m so thankful I took that step and did it.
Now my challenge to you is to consider how can YOU take the first step in doing some advocacy work! How might you help raise awareness about MSUD?