Caring for Krabbe Kids

Website created by the May family to provide layman information for families with severely ill children. Topics range from: Equipment lists, Medical Issues, Therapies, Information Resources (recommended books and websites), Some Financial Insights, Caring For Your Family, Witness (to Jesus Christ), and End of Life (and Funeral) Planning. Please note that all information is provided from parents perspective, and should not be construed as medical advice. Also, the website has not been recently updated.

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The Believing for Bryleigh Foundation

The mission of The Believing for Bryleigh Foundation is providing relief, support, and assistance to families affected by Metachromatic Leukodystrophy (MLD) and other Leukodystrophies and disabilities by helping to educate, create awareness and family support programs, funding research, and providing financial support.

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The Jackson Project

The mission of The Jackson Project is raise awareness about Krabbe Disease and other Leukodystrophies, provide support for families, and advocate for expanded newborn screening. The Jackson Project is a 501(c)(3) public charity formed in honor of Jackson Wallace, affectionately known as J-Bird, who had Krabbe Disease.

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The M.O.R.G.A.N. Project

Offers an extensive online searchable database of disability resources and grant/wish funders as well as other organization resources and searchable resources by state. We also maintain a Pediatric Equipment Exchange Program to offer parents an option to donate no longer used equipment and medical supplies and then donate them in turn to a family with a need, all at no cost to either the donor or recipient.

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ALD Alliance (formerly Aidan Jack Seeger Foundation)

Aidan’s Gifts helps families who face extreme financial stress attributed to the costs associated with caring for a child with ALD or another Leukodystrophy.

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