Advocacy

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 has an impact on medical issues, but also daily quality-of-life issues that can only be solved through policy change! Bobby Jones CSF has made advocating on behalf of patients and their families a major priority in recent years.

Your voice matters. You can advocate on behalf of patients living with these conditions around the United States in several ways.  To get started, visit our Advocacy 101 Toolkit page to learn how to best advocate for patients around the country. You can effect real policy change that will improve the lives of real people.

The toolkit describes current legislation that impacts patients and families. As you learn more about the legislation, you can also find some sample letters, phone scripts and trainings to reach out to your legislators, directly and make a difference!

Participate in the annual unite@thehill – coming in 2025!

This 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’ and family members’ federal representatives on Capitol Hill, which helps patients and families advocate for millions of others.

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. If you tag us in your post, we always do our best to re-share and amplify your message!

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

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.