It is so important to be a voice of strength and become a part of our recognized consortium of LGMD organizations. The Speak Foundation is the legal entity for the International LGMD Conference.
The CureLGMD2i Foundation, a 501(c)3 non-profit organization, was founded in 2010 by the Brazzo family. Their mission was to provide funding toward the development of a safe and effective treatment for Limb Girdle Muscular Dystrophy Type 2I/R9 (LGMD2I/R9). CureLGMD2i is focused on providing advocacy, spreading awareness and supporting scientific research toward a cure for LGMD2I/R9.
The LGMD2D Foundation is a non-profit organization built for families living with Limb-Girdle Muscular Dystrophy, type 2D / R3 - both patients and caregivers - by families with the same diagnosis. Our mission is to support research and clinical trials to speed the development of treatments and a cure for LGMD2D.
The Muscular Dystrophy Family Foundation uses the power of giving to increase the quality of life and independence of people with muscular dystrophy—and empower their families—through advocacy, education, and financial assistance. We provide clients with resources and educational opportunities, connect families together through social opportunities, give away a couple accessible vans a year, provide direct financial assistance for equipment and home modifications, and offer funding for partial van assistance.
Project Alpha is a non-profit association located in Spain that, after a personal history, was created to help and fight for a treatment for Limb Girdle Muscular Dystrophy within the Sarcoglycans (Alpha, Beta, Gamma, and Delta). The Sarcoglycanopathies include LGMD2C, LGMD2D, LGMD2E, and LGMD2F which are all subtypes of LGMD. The main purpose of the Association is to support scientific research of this disease to prolong the life of individuals living with sarcoglycanopathies and find a treatment for the disorder.
The LGMD2I Research Fund is a non-profit private foundation whose mission is to expedite the development of a treatment for Limb-girdle muscular dystrophy type 2I (LGMD2I). Through its grant awards program, the LGMD2I Research Fund promotes basic research, fosters clinical trial readiness and supports the translation of promising scientific discoveries into clinics.
Camron’s Cure Foundation is a non-profit public organization that is focused on uniting people afflicted by this rare disease and supporting vital research to find a cure and treatment for Limb Girdle Muscular Dystrophy, type 2S (LGMD2S).For More Info: https://camronscure.com
The LGMD-1D DNAJB6 Foundation is a non-profit public foundation whose mission is to maintain a central location for individuals diagnosed with Limb Girdle Muscular Dystrophy type 1D (LGMD1D) to meet, consolodate relevent news, and launch fundraising efforts in order to advance research. Genetic and molecular research for these orphan diseases are exploding and techniques that are developed to cure can often be shared with others often afflicted with other crippling genetic disorders that are seemingly unrelated.
The Jain Foundation’s mission is to cure muscular dystrophy caused by dysferlin protein deficiency. This dystrophy can be termed dysferlinopathy, but is also referred to as LGMD2B, LGMDR2, or Miyoshi Myopathy 1 (MM1). Dysferlinopathy is an orphan disease afflicting approximately 8-10 people/ per million and receives little funding from traditional sources. The Dysferlin Registry is curated by the Jain Foundation and includes genetically confirmed individuals with dysferlinopathy from anywhere in the world. Individuals can apply for registry placement at jain-foundation.org
BL&L, a non-profit organization established to raise money dedicated exclusively to Limb-Girdle Muscular Dystrophy type 2A (LGMD2A) and to educate on the disease course and associated struggles of LGMD2A.
In 2007 when BL&L was established we wanted the organization to look beyond the current status in both the course of the disease and perceptions of what’s to come; to believe there is a cure out there and we’ll find it; and in hope for what’s to come in the future.
Coalition to Cure Calpain 3 (C3) has a pinpoint focus: to drive a cure for LGMD2A/R1, (calpainopathy). For the last decade, C3 has been the U.S.-based non-profit leader of funding for LGMD2A/R1 research and is led by Scientific Director Dr. Jennifer Levy who directs the grant program, with a portfolio focused on gene and cell therapy, novel approaches, tool creation, and clinical trial readiness.
The Family Group of Beta-sarcoglycanopathy (GFB ONLUS) is a group of families with people with beta-sarcoglycanopathy and other Limb-girdle muscular dystrophies. GFB ONLUS is a non-profit organization and it was created to finance research projects aimed at treating Limb Girdle Muscular Dystrophy type 2E (LGMD2E). Formed in February 2013 in Italy, GFB ONLUS has raised more than $750.000 for research into LGMD2E. Among other initiatives, the association is currently funding a gene therapy project about LGMD2E.
LGMD Awareness Foundation, Inc. is a 501(c)(3) advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as limb-girdle muscular dystrophy (LGMD). Our focus is to provide curated educational information and resources for the LGMD community. By increasing awareness of and advocating for individuals living with LGMD, we aim to assist in advancing the genetic diagnosis, care, and treatment. We also coordinate LGMD Awareness Day which is celebrated worldwide on September 30th each year. Learn more at www.LGMD-Info.org
The LGMD2L Foundation’s goal is to unite people afflicted by the rare disease Limb-girdle muscular dystrophy type 2L (LGMD2L). Also, provide an open forum to connect, discuss, and ultimately build a community of LGMD2L members. Although our disease is rare and poorly understood, we have established this foundation to build a database of LGMD2L patients for future scientific research and clinical trials. The only way to bring about change is to unify those who are driven for a cure!
The family of Kurt and Peter Frewing founded the Kurt+Peter Foundation to apply available scientific techniques to treat or potentially cure limb girdle muscular dystrophy, type 2C. The Kurt+Peter Foundation funds “translational research” to take science from the lab to produce drugs that will treat the disease. The Kurt+Peter Foundation works with top tier research institutions and biotechnology companies. When necessary, the Kurt+Peter Foundation will act as a non-profit drug company, directly licensing the technology, applying for regulatory approval, and funding clinical trials.
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The International Limb Girdle Muscular Dystrophy Conference is a program and project of the Speak Foundation. To find out more about the Speak Foundation, visit our website at www.thespeakfoundation.com