unite@thehill: Advocate for Chiari, syringomyelia and related disorders

Advocacy is an important part of improving the every day lives of patients and families living with a diagnosis of Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders. Bobby Jones CSF has made this a priority in recent years.

You can advocate on behalf of patients living with these conditions around the United States in several ways.


Participate in the annual unite@thehill.

This annual event held in/near Washington, D.C. includes a half-day of wellness seminars to help patients and families self-advocate. The next day is a full day of meetings with those patients’/family members’ federal representatives on Capitol Hill, which helps patients and families advocate for millions of others. Learn more about this year’s event below or skip right to registering here!

Write a letter/email or call your representatives.

You can always get involved in advocacy on the federal, state and local level by contacting your representatives.

Share your own story.

If you feel comfortable, share your personal story on social media. You can also share any of the stories on Bobby Jones CSF’s website or on our sponsored podcast: The Chiari Champion. If you tag us in your post, we always do our best to re-share and amplify your message!


Sunday-Monday | May 7-8, 2023

Sunday Half-Day Wellness Workshops at the Hilton Arlington (950 N Stafford St, Arlington, VA)

Monday – Congressional Meetings & Advocacy on Capitol Hill (Washington, DC)

Cost: $15 child/$30 adult



This event happens every year in and around Washington, D.C.! We prioritize both self-advocacy and advocacy on behalf of others with various presentations, workshops and of course, Congressional meetings with your representatives!

Please let us know if you have any mobility issues! Meetings with Congressional Representatives may include a significant amount of walking, depending on the number of meetings/appointments you would like to have and whether or not those Reps are members of the House or the Senate. We recognize that patients with these disorders will want to advocate for themselves, and that those patients may have difficulty walking. Some patients may require assistance. We will be doing our best to ensure your advocacy trip is successful!

Have questions about how to participate in the unite@thehill? Email us: info@bobbyjonescsf.org


Below are tentative sessions part of the 2023 unite@thehill!

  • Power Over Pain: Cultivating Resilience of Mind and Body to Live with Joy – Dr. Cassie Parker (Physical Therapist, Resilient Wellness PTs)
  • Relationships in Crisis: Interactive Session with Patients and Caregivers – Kristin & Michael Means (Support Group Leaders, Bobby Jones CSF)
  • CBT Tools for Coping with Chronic Illness – Dr. Victoria Felix (Clinical Psychologist, Cognitive Therapy for Women)
  • Preparing for Your Advocacy Meeting on the Hill: Strategies for Success – Julie Rauch (Zebra Patient Advocate)
  • Crafting Your Patient Story: Workshop
  • Musical Performance – CarEoke


Monuments and memorials, eclectic neighborhoods, true local flavor – Washington, DC is a place unlike any other. It’s your home away from home with free museums and America’s front yard. Plan your trip to the nation’s capital by checking out all the things to do, places to eat and ways to stay. Visit washington.org!


  1. Ensure your Senators are involved in the Rare Disease Congressional Caucus.
  2. Ensure your Senators and House Representatives are supporting current relevant legislation that can improve the lives of patients and families.
  3. As always,ensure your Senators and House Representatives are supportive of health care access and benefits for Americans living with rare, neurological disorders


Watch the unite@thehill video series for guidance, then find your local representative by zip code or state (House and Senate) and put that pen to paper (or fingers to keyboard)! Briefly explain your story and why supporting biomedical research is important to you.

Watch this unite@thehill informational video to learn more:

Previous unite@thehill Successes

Recommended for Inclusion in Personalized Medicine Caucus

The legislative assistant from Tim Scott’s (R-SC) office who met with our super advocate from Charleston, SC recommended Chiari, syringomyelia and related disorders be included in an upcoming briefing of the personalized medicine caucus! Senator Scott is co-chair of this caucus. Briefings are held to educate other members of Congress.

2022 unite@thehill RECAP

“It was hot weather and hot topics that brought all of us together this Sunday, June 5th and Monday, June 6th in our nation’s capital for the annual Bobby Jones CSF unite@thehill event that included a half-day wellness seminar followed by advocacy meetings with members on The Hill.

Dorothy Poppe and the amazing staff from the Foundation rounded up a great array of speakers from future doctors involved in cutting-edge research of the genetic mutation responsible for hypermobile Ehlers Danlos Syndrome, to skilled PTs, psychologists and inspiration from fellow patients sharing how they’ve overcome some of this hurdles of a chronically ill life – it was a wellness day to be treasured for all. Families from across the US, caregivers and patients came together to learn, support, and prepare to take their passion to the Hill for meetings with members of Congress. Multiple meetings were held both virtually and in person with various state representative members graciously agreeing to hear from constituents on issues facing the rare disease community. Together we stood with purpose and passion for our community to be heard and to sustain research funding support from our leaders for diagnosis like Chiari, Syringomyelia, hypermobility and more.

Special thanks to our staff members, Cathy Poznik, Mary Poppe, and Kaitlyn Esposito, of the Foundation who made this miracle on the Potomac happen. We’re already planning for next year and look forward to having more opportunities for patients and their caregivers to participate.
– Christie Cox, 2022 unite@thehill attendee

Passage of 21st Century Cures

In February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, the 21st Century Cures Act became law, promising to fund more innovative medical research, especially for debilitating neurological disorders which are often overlooked for governmental funding.


Updated on 4/2023