Hey MTM-CNM Family! Consider spending your RARE Disease Week in a meaningful and powerful way as a rare disease advocate on Capitol Hill! The RDLA (Rare Disease Legislative Advocates), a branch of the EveryLife Foundation, has opened up applications for travel stipends to Rare Disease Week on Capitol Hill February 25-28, 2020, an event which brings together the rare disease community from all over the country in order to be educated on federal legislative issues, connect with other advocates, and share their unique, personal stories with legislators. The travel scholarship applications are open until December 10, 2019 (notifications for recipients and those waitlisted will be sent by December 18), so now is the time to apply!
At the MTM-CNM Family Conference in St. Louis, MO, this past summer, Lindsay Lykens and Marie Wood shared about their experiences in legislative advocacy and attending Rare Disease Week on Capitol Hill this past February along with Craig Lykens and Myo the Traveling Turtle! Marie also announced the development of COLA, the Committee on Legislative Advocacy, as an organic expansion of the broader advocacy work our team has been committed to for the past decade!
With the exciting developments in current and upcoming clinical trials, we know that there are still hurdles up ahead, and as Marie shared on October 16, 2019, when she and Erin spoke during the joint educational webinar with the American Brain Coalition and American Society of Gene and Cell Therapy, “As patient advocates, we want to see the drugs reach ALL of those affected by the condition, whether young or old, mild or severe. No man, woman, or child left behind! Sometimes that means asking hard questions and putting pressure on those who hold power over these choices, and that’s something we’ve always been willing to fight for.” We don’t refer to our #mtmcnmfamily members as “warriors” for nothing, we know how strong you all can be when it counts, so we would love for those who are interested in legislative advocacy to join us this coming year on the Hill!
For further information about the schedule, hotel options, and more about Rare Disease Week, please go to the Rare Disease Week on Capitol Will webpage.
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MTM-CNM Family Connection's Blog
Sharing information, resources, updates, and thoughts on various topics of interest to the MTM-CNM community.