Screen_Shot_2016-03-23_at_1.06.56_PM.png For the past few years, CSF has 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.

I n 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 something very special planned for 2018...


In collaboration with other patient advocacy organizations, CSF will host the 2018 unite@thehill as a three-day conference of action! This year, the unite@thehill will take place Saturday evening, June 23rd through Monday, June 25th in Bethesda, Maryland and Washington, DC!

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

Be a sponsor of the  2018 unite@thehilland help advocate to ensure important legislation officially becomes law! Sponsorship options HERE .

Thank you to our Partner Patient Advocacy Organization Sponsors

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Day 1 (Saturday evening): United We Stand Welcome Reception

      • Held from 7-8pm at the Bethesda North Marriott Hotel and Conference Center (5701 Marinelli Road, North Bethesda, MD 20852)

Day 2 (Sunday): Full-Day Patient Conference & Advocacy Training Sessions

  • A full day of eductional lectures, meant to help and educate patients and families living with Chiari malformation, syringoymelia, Ehlers-Danlos syndrome, dysautonomia, idiopathic intracranial hypertension, CSF leak, hydrocephalus and more
  • Interactive advocacy training sessions that will help you put your best foot forward during your meetings with your representatives

Day 3 (Monday): Walk to Capitol Hill

  • March to Capitol Hill to meet with your Congressional representatives
  • Share your story with the people who have the power to do enact real change

Further details about confirmed speakers and a conference agenda will be available in the coming weeks -- keep your eyes peeled for updates on CSF social media and email blasts! And make sure you sign up now to stay in the loop!

Some of the speakers we already have lined up:

      • Five-year Follow Up of Craniocervical Fusions - Dr. Fraser C. Henderson
      • Syringomyelia Update: Diagnosis, Treatment and Research - Dr. John Heiss
      • Title TBA - Dr. Jeffrey P. Greenfield
      • New Treatment Methods in EDS - Dr. Kevin Lasko
      • What is the Patient-Centered Outcomes Research Institute?" - Mr. Josh Krantz (PCORI)

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!

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Registration fees

There is a minimal registration fee to help cover the costs for educational lectures and a small reception for advocates.
Adults: $50
Each child with paying adult: FREE
Each additional child: $25

Need hotel accommodations?

We have secured a reduced-rate room block ($169 per night) at the Bethesda North Marriott Hotel and Conference Center (5701 Marinelli Road, North Bethesda, MD 20852). Reserve your room online here .

For phone reservations, please call one of the following numbers and j ust mention that you are attending the CSF unite@thehill! Reservations Toll Free: 1-877-212-5752 or Reservations Local Phone: 1-301-822-9200

Reduced rate room block is available until June 8, 2018 so reserve early.


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!


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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.

We will also be posting some helpful advocacy toolkits when it gets closer to the date! Stay tuned for updates!


Become Your Own Advocate on Capitol Hill

What is unite@thehill?

Revised: 4/2018

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