Blog PostsJan 2, 2019

Reflections on my day on Capitol Hill for Spina Bifida

By Tom Baroch, an adult with Spina Bifida

100 people, 29 States, 77 meetings at the Spina Bifida Association’s (SBA) first hill day, Teal on the Hill(TOTH) on May 9, 2018. We lit a match in on Capitol Hill DC to shine a light on issues facing the Spina Bifida community.

Kickoff. We arrived Tuesday afternoon, May 8, 2018. We had great dinner, with a welcome from SBA President & CEO, Sara Struwe. There were excellent presentations, including a “Spina Bifida Update” from the Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Center for Disease Control and Prevention (CDC), Coleen Boyle, PhD.

Next up: Training. Former U.S. Representative Phil Gingrey, MD, Sara Struwe and SBA advocacy co-chairs, Megan Sorensen and Will Dickey, led a “mock meeting” that provided insight and guidance on how to approach our meetings. We broke into groups  (a total of 15); who we’d be with on the Hill.

Margaret Maas, Tom Baroch. Rep Kihuen.Tim Brei.5.9.18.jpg
Left to right: Margaret Maes, me, Representative Kihuen and Dr. Timothy Brei

I was in a group that covered OR, WA, NV and UT. My teammates were Sheliah Roy, SBA Director of Marketing/Communications, Margaret Maes from Portland OR, mother of a 4-year-old girl with Spina Bifida and Timothy Brei, MD, SBA’s Medical Director and developmental pediatrician at Seattle Children’s Hospital, and an adult with Spina Bifida. Dr. Brei talked about the medical issues and the many difficulties related to SB in our meetings and was invaluable to our efforts for the day.

I started my day visiting with Senator Catherine Cortez Masto at her Wednesday constituent coffee. I was able to briefly share my story and make our “asks”:

  1. Join the SB Caucus
  2. Support funding at the NCBDDD at the CDC and
  3. Help pass Senate Passage of H.R. 3730 and/or S. 486 to provide access to “accessories” for manual wheelchairs

I also had a few minutes with Sen. Cortez Masto’s executive assistant. It was suggested that we schedule a meeting with the Spina Bifida Chapter’s Intermountain Region Chapter and Senator Masto’s local Las Vegas office. WE WILL DO THIS!

My other team members kicked their day off with a visit to Representative Jaime Herrera Beuler’s (R) WA office.

I hauled my “carcass” a half-mile to the House side to connect with my team. We met with a congressional fellow in Representative Pramila Japal’s (D) WA office.

Next up: A 45-minute meeting with Representative Ruben Kihuen (a terrific surprise) and his scheduler/legislative correspondent, Patrick Sullivan. Congressman Kihuen listened carefully to our stories and our goals for the visit. Margaret described a “day in the life” of her daughter, which illustrated the challenges she faces every day. I shared my story, including the lack of both pediatric and adult care in Nevada. We talked about the need for a clinic and better access to Spina Bifida trained doctors and resources.

We made our three “asks” and he told us, to let him know what we needed in terms of letters or other support. AND, we learned he signed on the Spina Bifida Caucus that day.

We then met with aides from Representative Curtis Stewart, (R) UT, and Representative Susan Bonamici (D) OR offices.

Our final visit was with Alex Keenan, Minority Staff Director for Senate Labor, Health & Human Services Appropriations Subcommittee- a pretty important guy. He works under the direction of Sen. Patty Murray’s office; currently Ranking Member of the Senate Health, Education, Labor and Pensions Committee. Mr. Keenan gave suggestions on appropriation language changes and other thoughts.

The Day’s End Back at the hotel, we debriefed with our groups and met our fellow advocates for dinner and informal feedback.

I left the next morning, feeling both tired and energized from the two days of activities.

A Note on our Young Advocates

We had several young advocates. They were troopers and had a great impact on our mission for the day. They are learning how to advocate not just for themselves, but for others. It was a treat to have them included in the day’s activities.

Carly Sorensen, 16-year-old with Spina Bifida, visiting with Representative David Young (IA). 

Closing Thoughts

It was a significant event. I hope that when SBA does this next year with sponsors to cover the cost, as this was not an inexpensive event. I also want to thank members of Congress and their staff for welcoming and listening to us.

I am thankful to the Spina Bifida Association of the Intermountain Region, Nevada for providing me with a scholarship so that I could attend Teal on The Hill 2018. I strongly advise those of you who might want to attend the 2019 Teal on the Hill to start saving and work with your groups to raise funds.

My hope also is that all of us who attended TOTH will follow up with their local congressional offices and meet with local staff. This can make a big impact.

And this is just the beginning!



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