On May 8, 2019, over 115 Spina Bifida advocates from 27 states descended on Capitol Hill, holding over 75 meetings with Members of Congress for the Spina Bifida Association’s 2nd annual advocacy day, Teal on the Hill.
Monica Still, an adult with Spina Bifida (SB) and second-time attendee said it best, “Teal on the Hill provided camaraderie but added to it a sense of purpose that was and is greater than self.”
The event kicked off with an opening reception, where attendees had the opportunity to mingle with old and new friends. The next day started bright and early, with a full day of training to prepare for our day on The Hill. About halfway through our training, Sara Struwe, SBA President & CEO received exciting news – the $8 million in funding for the National Spina Bifida Program (NSBP) at the Centers for Disease Control and Prevention (CDC) had been approved by the House Subcommittee on Labor and HHS. The room erupted in applause, and everyone was even more excited to go on the Hill the next day.
While on the Hill, Stephanie Rasmon, mom to a 4-year old Luca noted, “We were able to make our asks, but our stories were heard. I watched as handed out Luca’s picture and how eyes lit up when they saw how stinking cute he is, and then the bombshell jaw drop when I tell them how many surgeries he has had and the hard decisions we make hoping they are the right ones.”
Stories like Luca’s were shared throughout the day. And our fierce advocates asked their members to:
- Fund an increase of $2 million for the NSBP at the CDC, bringing the total to $8 million. The Program has been funded at $6 million for the last five years.
- Protect access for specialized equipment for manual wheelchairs by supporting the House and Senate bills (HR 1223 and S 1223 respectively)
- Sign on the Spina Bifida Caucus
At the end of the day, we had another surprise; we received word that our request for $8 million for the NSBP at the CDC had been approved by the full House Appropriations Committee. This news set the tone for the Celebration Dinner that followed our day on the Hill. The evening was filled with stories from the day, a presentation of awards, and lots of warm feelings and excitement from a successful day.
Even though Teal on the Hill is over, we still have much more work to do, and you can help with just a few clicks of a button. Click here to ask your Members of Congress to support the funding for the National Spina Bifida Program at the Centers for Disease Control; protect access to specialized equipment for manual wheelchairs, and join the Spina Bifida Caucus. Ask your friends and families to do the same!
And we want to give a big thanks to this year’s Teal on the Hill sponsors. Blue Sponsors – Avion Pharmaceuticals, Coloplast, and Smith & Nephew. Gray Sponsors – McKesson Patient Solutions and Cure Medical.