Participate in your own virtual Day on the hill

It is very important to educate Congressional offices about LGMD. Sharing your story and how policy decisions made in DC impact your everyday life can be very impactful. Thank you for your desire to advocate on behalf of the LGMD community! In lieu of an in-person meeting, we encourage you to outreach to your Members of Congress directly to schedule a meeting virtually. 

This page includes all you will need to participate virtually:

• A link to find your representatives 
• A webinar on LGMD Day on the Hill
• Suggested wording for your initial email
• 6 one pagers to review/share with the staff with your email

To equip you, our team at Thorn Run Partners has provided this helpful webinar that we suggest you watch to learn more about the process for requesting virtual meetings, what they will look like, and also the policy priorities raised by LGMD advocates on Capitol Hill.  Let us know if you have questions for Thorn Run.

We would suggest you reach out to your Senators and Representative’s office requesting virtual meetings. You can find contact information for your Member of Congress at https://www.congress.gov/members/find-your-member using your home address.

Review the six downloads below that we had prepared for September's in person Hill Day, which you can provide to the staff as part of an emailed meeting request.

You can use the following draft wording for your email (edit as needed):

"Dear XX:

I am a constituent from [insert city/town]. I live with/am a caregiver for someone who lives with Limb- Girdle Muscular Dystrophy (LGMD). LGMD is an ultra-rare disease for which there is currently no FDA approved treatment. I am writing to request a virtual meeting to discuss policy issues impacting people like me living with LGMD. appreciate any time you or an appropriate colleague are able to provide for me to tell my story and to share more information about the importance of the FDA’s process for approving rare disease drugs and the need for incentives to ensure rare disease patients are not left behind in drug development. Additionally, I hope to discuss long-term care and the need for research to support the development of treatments in the future."