Participate in your own virtual Day on the hill
FIND OUT HOW YOU CAN ADVOCATE FOR THE LGMD COMMUNITY FROM YOUR OWN HOME!
DID YOU MISS THE IN-PERSON LGMD DAY ON THE HILL IN D.C. IN SEPTEMBER? YOU CAN STILL PARTICIPATE!
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."
Sign up for the LGMD advocacy network
The Speak Foundation is so glad you want to be a part of future advocacy initiatives for the LGMD community!
Access to Rare Disease Treatments
Let's Discuss Policy and Access
The Speak Foundation is proud to be a co-author of a new paper that does a deep-dive on the implications of international pricing policies on access to care for rare disease patients. As the United States considers policies to import international prices and the quality adjusted life year (QALY) relied on by other countries to value health care, The Speak Foundation is concerned about what it means for patients with limb-girdle muscular dystrophy (LGMD). We are so close to having FDA-approved treatment options for LGMD patients. Any threat to their development or access to them, we are going to oppose.
Patient Listening Session for Limb Girdle Muscular Dystrophy
On October 20th, 2020, the LGMDs were able to meet with the FDA to share our patient experiences.
The virtual FDA Listening Session on Limb Girdle Muscular Dystrophies was held October 20, 2020. This was a patient-led listening session organized by a group of advocacy organizations focused on various aspects and genetic subtypes of LGMD. Fifteen presenters, all patients or family members representing twelve different LGMD subtypes, gave presentations in a webinar format which included personal narratives, slide presentations, and videos. Download the full summary to read all that was shared by individuals living with LGMD.
The LGMD Listening Session was planned and organized by a consortium of advocacy organizations, focused either on raising awareness or assisting patients living with LGMD and related neuromuscular diseases, or on achieving clinical trial readiness and developing treatments for particular genetic subtypes of LGMD.
● The Speak Foundation (uniting all forms of LGMD)
● Coalition to Cure Calpain-3 (focused on LGMD2A/R1)
● Jain Foundation (focused of LGMD2B/R2)
● Team Titin (Focused on LGMD2J/R10)
● Kurt+Peter Foundation (focused on LGMD2C/R5)
● LGMD Awareness Foundation
● CureLGMD2i Foundation
● Beyond Labels and Limitations
● Breathe with MD
● Camron’s Cure (focused on LGMD2S/R18)
● LGMD2L Foundation
● LGMD1D/D1 DNAB6 Foundation
Donate to our Mission to Improve the Quality of Life for those Living with Limb Girdle
The Speak Foundation is a 501c3 which means all donations are tax deductible. We are the oldest charity in the muscular dystrophy world that is patient led and patient run by individuals living with LGMD.
Copyright © 2008 The Speak Foundation
The Limb Girdle Muscular Dystrophy Foundation
All Rights Reserved.
The Speak Foundation is a 501(c)(3), Est. 2008.