Nothing great has ever happened without someone first believing it was possible. The National Limb Girdle Muscular Dystrophy Conference is a program and project of the Speak Foundation - a registered 501c3 since 2008. We are at a pivotal moment for LGMD treatments and it will take all of us together supporting efforts to find cures for every form. With LGMD, there are many subtypes so this is a complex disease to treat as there is not a current method of treatment available that fits all types.
In 2006, our Founder, Kathryn Bryant, was diagnosed with LGMD 2i. At that time, there was a blank space for adult patients with muscular dystrophy and very few resources. The Speak Foundation began a free yearly conference in Atlanta, Ga to address the need in 2008 for any muscular dystrophy patient. TSF has had 12 conferences thus far. Since 2016, we have focused on creating strategic partnerships with biotech companies interested in LGMD research. Our LGMD Personal Care Attendant Program, the National LGMD Conference, the LGMD Patient Pipeline and Registry (in development), and our newest project, LGMD Day on the Hill (in conjunction with LGMD Awareness Day), are all ways to unite our entire LGMD patient community to become a unified voice.
Coalition to Cure Calpain 3 (C3) was founded in 2010 for the specific purpose of funding research efforts focused on understanding the biology of and finding a cure for LGMD2A – a form of Calpainopathy. This organization was created by people with LGMD2A for people with LGMD2A as both founders have this progressive disease.
The Family Group of Beta-sarcoglycanopathy (GFB ONLUS) is a group of families with beta-sarcoglycanopathy and other Limb-girdle muscular dystrophies. THE GFB ONLUS is a non-profit organization and was created to finance research projects aimed at treating LGMD2E.
Limb Girdle Muscular Dystrophy Awareness Day is an annual collaborative effort to globally raise awareness of individuals living with Limb Girdle Muscular Dystrophy (LGMD) and is held on September 30th. The fifth annual Global “Limb Girdle Muscular Dystrophy Awareness Day” will be held on September 30th, 2019.
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 CureLGMD2i Foundation is a non-profit public charity and our goal is to support cutting-edge research facilities who are working to establish an effective treatment or cure for Limb Girdle Muscular Dystrophy, Type 2I (LGMD2I).
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.
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 is a non-profit private foundation whose mission is to cure muscular dystrophies caused by dysferlin protein deficiency, which includes the clinical presentations Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi muscular dystrophy 1 (MMD1).
The Foundation’s focused strategy includes funding and actively monitoring the progress of scientific research projects in key pathways towards a cure, providing financial and logistical support to promising drug candidates to accelerate them to clinical trials, funding clinical trials and studies, encouraging collaboration among scientists, and educating LGMD2B/Miyoshi patients about their disease and helping them with their diagnosis (e.g., funding dysferlin protein and gene mutational analysis).
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.
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.
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
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 National LGMD Conference.
Kathryn serves as our Conference Administrator and is also the CEO and National Director of the Speak Foundation, a registered 501c3 since 2008. The National Limb Girdle Muscular Dystrophy Conference is a legal program under the Speak Foundation. The Speak Foundation oversees the National LGMD Conference. Founded in 2008, Speak Foundation is the first patient run nonprofit dedicated to improving the lives of those living with neuromuscular diseases, Kathryn experienced rhabdo multiple times as a child, was diagnosed with muscular dystrophy, and later officially given a diagnosis of LGMD2i (dystroglycanopathy). Kathryn is an honors graduate of the University of Virginia and also a recipient of multiple academic and professional awards. She graduated with a dual Master's from Southwestern Seminary. Speak Foundation also sponsors a patient and family respite conference for all forms of muscular dystrophy in Atlanta, GA every year. Find out more at www.thespeakfoundation.com/conference.
Brad serves as the Chairman of our National Conference. He earned Bachelor’s degrees in Physics and French from Stanford University, and his Ph.D. in Applied Physics from Cornell University. He began to have symptoms of dysferlinopathy (LGMD2B/Miyoshi distal myopathy) as he was starting college. Brad worked for many years as a physicist at the Naval Research Laboratory in Washington, DC, before moving to Seattle and joining the Jain Foundation full-time to work on dysferlinopathy. He is also a self-taught expert on dysferlinopathy and has a long history of involvement in the dysferlin field. He created the first website about dysferlin deficiency in 2001, and is active in the online patient community, is a member of the Patient Advisory Board for Myonexus Therapeutics, and has given numerous presentations at scientific and patient conferences.
Carol serves as the Vice-Chairwoman of our National Conference. She is the founder and coordinator of “Limb Girdle Muscular Dystrophy Awareness Day” which is celebrated annually on September 30th worldwide. Carol is also the Director of Community Outreach for Coalition to Cure Calpain3, an organization focused on finding a cure and treatment for LGMD2A (also known as Calpainopathy).
Carol has lived with a diagnosis of LGMD2A/Calpainopathy since her childhood and is very involved with the LGMD community worldwide. She is a graduate of Mount Mary University where she graduated with a BS in Occupational Therapy and worked as a Registered Occupational Therapist (OTR) for many years. Carol was also crowned Ms. Wheelchair Wisconsin 2016 and has a long history of being an advocate for individuals with disabilities.