NAME OF ORGANIZATION: Cure LGMD2T
WEBSITE: https://curelgmd2t.org/
FACEBOOK: https://www.facebook.com/curelgmd2t
INSTAGRAM: https://www.instagram.com/curelgmd2t
WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:
Limb-Girdle Muscular Dystrophy 2T/R19 (LGMD 2T/R19)
IS THERE AN LGMD-SPECIFIC REGISTRY? IF SO, WHRE CAN PEOPLE ACCESS IT?
Fill out this form to complete the patient registry! This is a vital database that helps advance research and group patients inflicted with Limb-Girdle Muscular Dystrophy 2T. https://risingline.wufoo.com/forms/lgmd-2t-patient-registry
IS YOUR ORGANIZATION A NON-PROFIT?
Yes, Cure LGMD2T is a 501 (3)(c) non-profit organization. All donations are tax-deductible.
WHAT INSPIRED THE CREATION OF YOUR ORGANIZATION?
The Garner family founded Cure LGMD 2T foundation after our son, Luke, was diagnosed with Limb-Girdle Muscular Dystrophy 2T/R19. We fully understand the complexities of this disease and the critical need to raise awareness. Following Luke’s diagnosis, our family made it our priority to spread the message of hope to others affected by this condition.
WHAT IS YOUR ORGANIZATION’S MISSION?
Our mission is dedicated to raising awareness for Limb-Girdle Muscular Dystrophy 2T and providing critical funding for research into effective treatments. Through personal donations, grants, and community fundraising efforts, we aim to accelerate scientific progress, support those living with this condition, and inspire hope for a brighter future.
WHAT SERVICES DOES YOUR ORGANIZATION PROVIDE?
Genetic testing access, advancing research, awareness & education, and funding directed toward finding treatment or a cure.
WHAT IS YOUR ORGANIZATION MOST PROUD OF?
We are most proud of our organizations efforts to unite a global community around a rare disease that was invisible not very long ago. Our organization works to not only find answers, but hope. We are building a strong community and network of researchers, physicians, and patient advocates to advance research and push for a treatment or cure. The individuals that deeply care and accelerate our momentum is what we are most proud of.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT YOUR ORGANIZATION?
We want people to know that Cure LGMD 2T aims to fight for the community of individuals living with GMPPB-related Limb-Girdle Muscular Dystrophy. We are a patient-driven organization, led by individuals and families who endure the challenges associated with LGMD 2T. We understand the urgency, the gaps in care, in research, in recognition and we are here to change that.
HOW CAN PEOPLE SUPPORT YOUR ORGANIZATION?
WHAT IS THE BEST WAY TO CONTACT YOUR ORGANIZATION?
You can contact our organization by filling out the “Contact Us” form on our website or calling/emailing a board member directly.
jgarner@curelgmd2t.org
lgarner@curelgmd2t.org
bredman@curelgmd2t.org
IS THERE ANYTHING ELSE YOU’D LIKE TO ADD?
We want to extend out thanks to the entire Limb-Girdle Muscular Dystrophy (LGMD) community – patients, families, researchers, physicians, and advocates. Our capabilities are fueled by your strengths. At Cure LGMD 2T, we are optimistic, ambitious, and committed to supporting those living with this rare disease. Together we are developing a path toward treatments, a deeper understanding, and ultimately, a cure.
