Resources
Advocacy groups
The limb-girdle muscular dystrophy type 2I/R9 (LGMD2I/R9) community has made exceptional strides in spreading awareness of the unmet medical needs of people with LGMD2I/R9 and creating a network to connect them with physician experts in neuromuscular diseases. Our partnership and collaboration with patient advocacy groups are essential to helping us understand what’s meaningful to people affected by this condition. Connect with our patient advocacy team at [email protected].
There are many independent advocacy groups that provide resources and support for individuals with LGMD2I/R9. Some of these groups and resources are listed below. You or your loved one’s health care provider can help you identify resources or a group that best suit your needs.
CureLGMD2i Foundation
Founded in 2011, the CureLGMD2i Foundation is a nonprofit organization with a mission of providing advocacy, spreading awareness, and supporting scientific research and drug development for limb-girdle muscular dystrophy (LGMD). To date, they have provided more than $1.1 million to scientific and community programs.
The Speak Foundation
Founded in 2008 as the first patient-led organization for muscular dystrophy, TSF offers education, peer support, and advocacy for the worldwide LGMD and rare neuromuscular disease (NMD) community. It publishes the LGMD News magazine and has hosted international conferences and programs that amplify patient voices and promote research progress.
LGMD2i Research Fund
This nonprofit organization is committed to accelerating the finding of a cure for LGMD2I/R9 by supporting the most promising research projects and coordinating and managing the scientific process. They actively fund research for charitable purposes, forge partnerships with foundations and clinicians, and support patients with diagnostic and clinical trial resources.
LGMD Externally Led Patient‑focused Drug Development (EL‑PFDD) Meeting
The EL-PFDD meeting was held on September 23, 2022, and brought together patients with 6 LGMD subtypes (2A, 2C–F, 2I/R9) to describe disease impact, treatment priorities, and decision factors. The meeting was organized by a coalition of LGMD nonprofits and is available to view online.
LGMD Awareness Foundation
This nonprofit advocacy organization is dedicated to raising worldwide awareness of LGMD. In collaboration with other LGMD groups, they focus on providing curated educational information and resources. By increasing awareness of and advocating for individuals living with LGMD, the foundation assists in advancing diagnosis, care, and treatment as well as coordinates LGMD Awareness Day, which is celebrated worldwide on September 30 each year.
Hear from people with LGMD2I/R9
Listen to On Rare, a BridgeBio podcast where we talk to patients and
caregivers of a rare disease to learn more.
“Improvise. Adapt. Overcome.” Dan is living with LGMD2I/R9
On Rare | Episode 20
35 min
“Love isn’t love till it’s given away.” Determination has helped Lacey fulfill her dreams but hasn’t stopped the progression of LGMD2I/R9
On Rare | Episode 16
46 min
Something was not right with my muscles.” LGMD2I/R9 and the physical struggle to do basic life activities
On Rare | Episode 2
40 min