The national Spina Bifida Association hosted their annual Teal on the Hill advocacy day on Tuesday, February 28th to ask for increased support of the Spina Bifida Program at the Center for Disease Control that collects data of 11,000 patients with spina bifida at 22 clinics across the country, as well as the Stop the Wait Act sponsored by Bob Casey of Pennsylvania to drop the wait of SSDI and Medicare benefits once a person is approved for disability services. Four Ohioans participated, including John Munnis, Jr., Diane Burns, Alexis Allen, and Isabella Burton, a self-advocate who attended for the first time. Along with folks from Indiana and SBA staff, Giana Spears, we met with both Representative Wenstrup and Senator Brown, in addition to 3 representatives from Indiana. We plan to meet with at least one representative from West Virginia in coming weeks.
Isabella was excited to expand her advocacy efforts to a national level this year. “Teal on the Hill 2023 was exciting. Hearing the stories of others with spina bifida, statistics, goals for 2023, the ways how others advocate and meeting with representatives was eye opening. This being my first time attending, I wasn’t quite sure what to expect. But I ended the training with even more ways to advocate for myself and for others living with spina bifida.”
Contributed by Isabella Burton