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Letters of Support From Our Community

“As long-standing collaborators on Aicardi-Goutierès syndrome (AGS) research for more than nine years, we enthusiastically look forward to supporting this application to the Rare Diseases Clinical Research Network (RDCRN).”

- Devon Cordova, AGS Americas Association

“The Global Leukodystrophy Initiative offers our communities hope that we will see advancements and understanding and potential therapies and treatments in our lifetime.”

- Dave Manley, PMD Foundation

“The Calliope Joy Foundation is dedicated to supporting this exciting collaboration and we are eager to build on our partnerships to improve care, fund research, and better support families living with leukodystrophy.”

- Maria Kefalas, The Calliope Joy Foundation

“We believe that a research consortium with the interests of rare diseases at the forefront will help provide a voice to so many who may feel underrepresented.”

- David McIntyre, The Bethanys Hope Foundation