NAME OF ORGANIZATION: LGMD-1D DNAJB6 Foundation
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
LGMD-1D, although we are currently a registry for LGMD 1A to 1H
IS THERE A LGMD PATIENT REGISTRY?
Yes, it can be accessed at www.lgmd1d.org
Is your organization a Non-Profit? If so, what type:
Yes, we are established an a 501 (c)(3) non-profit organization
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION:
Our family’s long history of LGMD-ID and 40-year pursuit for a cure! We were inspired by the GRASP-LGMD project sponsored by the MDA.
WHAT IS YOUR ORGANIZATION’S MISSION:
To provide an international registry for underrepresented autosomal dominant forms of LGMDs. We fundraise through local events, Amazon Smile and online donations to defray travel expenses for patients in need. We hope through organizing our particular dominant condition we can speed up research and a cure.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE:
The LGMD-1D DNAJB6 Foundation provides organization, recruitment, and funding so patients can access research centers.
WHAT IS YOUR ORGANIZATION MOST PROUD OF:
We have provided a website portal and Facebook community for people to meet and share experiences. We have raised enough money to significantly offset travel expenses for those in need.
For those with an orphan disease, providing a community, registry, and voice for those who feel left behind.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT YOUR ORGANIZATION?
If we can cure this orphan disease than many more unrelated genetic diseases will benefit. We are here for you, please take advantage!
HOW CAN PEOPLE BECOME INVOLVED IN SUPPORTING YOUR ORGANIZATION?
Please see our website: www.lgmd1d.org Consider a donation at the website for those who are less fortunate. Promote our site, our mission and donate or shop Amazon Smile and select the LGMD-1D DNAJB6 Foundation as you preferred charity.
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION?
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
This is a long journey and five years from now this will all pay off. We would like to thank the research and support staff at the Neuromuscular Clinic at Washington University St Louis, without whom this would not be possible. Thank you, William S Lowery, MD