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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…

In collaboration with other patient advocacy organizations, Bobby Jones CSF hosts unite@thehill in conjunction with a conference focused on advocacy and action!

If you are interested in being a partner patient advocacy organization, read more HERE.

Be a sponsor of the  2020 unite@thehill and help advocate to ensure important legislation officially becomes law! Sponsorship options HERE.

2020 ADVOCACY EFFORTS ARE BEING PLANNED!

Got questions about how to attend Neuro Connect Summit / unite@thehill in 2020? Email us: info@bobbyjonescsf.org

 



THANK YOU TO OUR PARTNER PATIENT ADVOCACY ORGANIZATION SPONSORS

We hope you will join us this year to learn new things about these disorders AND walk to the Hill to make a real change! For more information contact us here.

MOBILITY ISSUES

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 9/2019