Foundations and Organizations

Patient/parent advocacy charities or 501(c)3s that work on behalf of people affected by leukodystrophy.

 

Aidan Seeger Foundation- Founded in 2013, this is a parent advocacy group for adrenoleukodystrophy (or ALD) and works to support ALD newborn screening.

The Calliope Joy Foundation- Founded in 2013, this is a parent advocacy group that works closely with the Leukodystrophy Center for Excellence at the Children’s Hospital of Philadelphia and supports families affected by all forms of leukodystrophy.

Elise’s Corner- Founded in 2015,  Elise’s Corners the first parent advocacy group working on behalf of  children affected by Alexander disease

Hunter’s Hope-  They host the annual Hunter’s Hope Symposium and support Kelly Tough Walks. They have worked to established Leukodystrophy Care Network to improve the care and treatment for those affected by leukodystrophies. Hunter’s Hope champions newborn screening efforts for Krabbe disease (or globoid cell leukodystrophy).

The MLD Foundation-  Founded in 2001, this parent advocacy group  hosts an annual event for families affected by MLD (metachromatic leukodystrophy) and advocates for MLD newborn screening.

United Leukodystrophy Foundation- Founded in 1982, the United Leukodystrophy Foundation advocates for all forms of leukodystrophy.  They host an annual conference for medical professionals and patient/parent advocates.

Legacy of Angels Foundation- Founded in 2008, the Legacy of Angels Foundation is a private giving foundation that funds research for Krabbe disease.

The Myelin Project- Founded in 1989 by the Odone family, Lorenzo Odone and his parents were the inspiration for the film “Lorenzo’s Oil.” The Myelin Project supports research for leukodystrophies with a focus on ALD/AMN. 

Olivia Kay Foundation- Founded in 2012, the Olivia Kay Foundation provides hand crafted positioning pillows to pediatric patients. 

Stop ALD- Stop ALD is a patient/parent advocacy group that is focused on accelerating research and innovative therapies for ALD. 

GLIA- Founded in 2013, the Global Leukodystrophy Initiative Association brings together clinicians, researchers, and advocacy groups to improve both clinical care and research.

NORD- Founded in 1983 when a group of parents formed a coalition to pass the Orphan Drug Act of 1983, NORD (National Organization of Rare Disorders) is a leading organization for parent/patient advocates in the rare disease community.

Global Genes- Founded in 2009, Global Genes is a leading rare disease patient advocacy organization.

Australasian Leukodystrophy Foundation - The Leukodystrophy Resource & Research Organisation Incorporated (LRRO) and the Australasian Leukodystrophy Foundation (ALF) were started by Bob Wyborn to meet an urgent Australasian need to supply and support research for leukodystrophies and related leukoencephalopathies.

The AGSAA- is a 501(c)3 that raises funds for a form of leukodystrophy known as Aicardi-Goutieres syndrome (AGS). The organization seeks to raise awareness and support research for AGS.

ALD Connect - is an innovative marriage of researchers and families/advocates whose goal is to rapidly improve the quality of life for adrenoleukodystrophy patients/families and eventually eradicate the disease entirely. 

Bethany’s Hope Foundation - The 20 year old Canadian based charity works to fund research in metachromatic leukodystrophy.

National Tay-Sachs & Allied Diseases Association (NTSAD) - is one of the oldest patient advocacy groups in the United States.  They fund research, support families, and raise awareness. NTSAD advocates FOR A FORM of leukodystrophy called Canavan disease.  Some forms of leukodystrophy (like globoid cell leukodystrophy and MLD) are also lysosomal storage disorders like Tay-Sachs. 

The PMD Foundation - This 501(c)3 works to support families affected by Pelizaeus-Merzbacher disease through education, research, service and advocacy.  

The Child Neurology Society is the leading association of pediatric neurologists in the United States, Canada, and worldwide devoted to fostering the discipline of pediatric neurology and promoting the optimal care and welfare of children with neurological and neuro developmental disorders.

VWM Families Foundation - aims to raise awareness of Vanishing White Matter disease, to raise money for research and to support families living with VWM within the United States and worldwide.   

Fondation de tout pour Loo - is based in Canada and supports research for Krabbe disease and other forms of leukodystrophy.

Courageous Parents Network - is an on-line destination created by families, for families, to support, guide and strengthen them as they care for very sick children. 

Partners for Krabbe Research - Established in 2012, Partners for Krabbe Research is a 501(c)3 foundation's mission is designed to increase awareness and to support research to improve the lives of those born with Krabbe Disease.

Krabbe Connect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge.

The Foundation to Fight H-ABC seeks to raise awareness and fund research for H-ABC leukodystrophy.

The mission of The Canavan Research Foundation is to fund and support research to cure Canavan disease and apply these findings to create therapies for other genetic brain diseases such as Parkinson disease and Alzheimer disease.

The United MSD Foundation was established to cure multiple sulfatase deficiency (MSD) a lysosomal storage disorder and leukodystrophy that impacts 1 in 1,000,000.

ELA (European Leukodystrophy Association)  supports patients and families diagnosed with  all forms of  leukodystrophy. Over the last twenty years, ELA has funded  414 research programs raised more than 30 million euros.  Originally founded in France, ELA now has affiliated programs all over Europe.

http://ela-asso.com/en/the-association/the-organization/ela-in-france/

There is also an ELA Germany https://www.elaev.de/

ELA Spain https://www.elaespana.es/

and additional affiliates in Portugal, Luxembourg, Belgium, Switzerland and Italy.

http://ela-asso.com/lassociation/lorganisation/ela-en-europe/

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