I WANT TO advocate


unite@thehill for Chiari, syringomyelia and related disorders

For the past few years, Bobby Jones CSF stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening.

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.

To keep the momentum moving forward, we have to continue making our voices heard…


Our family is so excited to attend unite@thehill this June!  It’s a wonderful opportunity to join forces with other families and have our voices heard. We can all help to make a difference by sharing our stories and explaining what it’s like to live with these conditions.  One of the best things about unite@thehill is being with those “who get it.”  It’s so nice for my kids to spend time with other kids who face the same struggles.  We are also looking forward to attending the “Wellness Sessions” that are scheduled for the day before.  Hope to see you there!
-Pam Fenner

2022 unite@hill Flyer
Sunday Wellness Sessions Flyer

Wellness Sessions:
-Support Group Sessions
-Hope on the Horizon: Highlighting new scientific discoveries and the future for patients like us
-How to keep exercising while staying safe and knowing your boundaries
-Psychological considerations and interventions for coping with chronic illness
-Dealing with disease
-Recipe for happiness
-Musical entertainment
-Training session/review of Capitol Hill meeting times

Got questions about how to attend unite@thehill in 2022? Email us: info@bobbyjonescsf.org

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!


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!


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 these unite@thehill informational videos to learn more:

Reviewed on 2/2022