I WANT TO advocate

unite@thehill

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…

2023 Advocacy efforts are being planned! Keep an eye out for 2023 registration

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

2022 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? 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!

THINGS TO DO WHILE IN DC

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!

WRITE AN EMAIL OR A LETTER

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