Every year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that helps the rare disease community including advocating for NIH research funding.
This year, FD Warrior Brittany Anderson was among those who attended Rare Disease Week and advocated on behalf of the FD/MAS community. We asked Brittany to share about her experience and what drives her to be an advocate.
“I think it’s important for us warriors to be our own advocate and always be learning how we can do that better,” said Brittany, who lives in Indiana and was diagnosed with FD when she was 19 years old. This is her second year traveling to DC for Rare Disease Week on Capitol Hill. “I had to learn the hard way that it’s up to us, people actually living with this disease, to make sure we get the best care possible.”
This year Brittany met with Senator Todd Young’s (R-IN) office, Senator Mike Brauns (R-IN), Rep. Susan Brooks (R-IN), Rep. Jim Banks (R-IN) and Rep. Jim Baird (R-IN). “Before Rare Disease Week I convinced Representative Greg Pence (R-IN) to co-sponsor the Ensuring Lasting Smiles Act,” said Brittany, “I have gone three years now with no teeth and this bill would make it possible for me to fix that and allow that surgery to be considered medical rather than cosmetic.” This is just one example of how sharing her story has helped Brittany push for change that could improve her life and the lives of many others in the rare disease community.
Rare Disease Week is more than just a way to use your voice, it’s also an opportunity to connect with others who share a similar experience. “I hope to attend this event every year and continue to grow the friendships and knowledge I’ve built here,” said Brittany, who got to reunite with several other FD Warriors in DC. She left this year’s event feeling energized and more engaged than ever. “I’m interested in starting a rare disease group in my state and engaging with other rare advocates,” said Brittany.
If you’d like to become more involved in advocacy, you don’t have to wait until next February. FDF is heavily involved with advocacy work, and the many advocates in our community have already made it possible for FD/MAS researchers to access hundreds of thousands of dollars for FD/MAS research. Our team will continue to meet with US representatives in the coming months to thank them for the work they’ve made possible. The FD/MAS community is very lucky to be included as a disease topic area in this year’s Defense Department budget, but we’ll need to work every year to make sure that research opportunity continues to be available for FD/MAS researchers. Reach out to Tovah via Tburstein@fibrousdysplasia.org for more information.