Visit The M.O.R.G.A.N. Project website The M.O.R.G.A.N. Project is a 501(c)(3) non-profit organization, established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and because we do not use our charitable contributions for salaries, 100% of …
Visit Bethanys Hope Foundation website Immediately following Bethany’s diagnosis in August 1995 with a terminal illness, Metachromatic Leukodystrophy (MLD), Lindey and Dave McIntyre recognized that her only hope was Research! Their medical team had informed them that there was nothing that could be done. There was no hope for Bethany! Due to a lack of …
Visit the Hunter’s Hope Foundation website Hunter’s Hope was established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease. While Jim and Jill have been blessed with the opportunity to share Hunter’s story and the hope of the Foundation …
Visit the MLD Foundation website The MLD Foundation is a 501(c)(3) non-profit US tax-exempt organization. We were formed in May 2001 to serve families throughout the world affected by metachromatic leukodystrophy (MLD), a terminal genetic disease. Our slogan, “We C.A.R.E” reflects our culture of Compassion, Awareness, Research and Education. Donations to the MLD Foundation are tax deductible and will be used …
Visit The Myelin Project website The Myelin Project’s mission is to fund research to find a cure for demyelinating diseases such as the leukodystrophies which are genetic, and multiple sclerosis which is acquired. Founded by Augusto and Michaela Odone for their son, Lorenzo, who suffered from X-linked adrenoleukodystrophy (X-ALD), the most common of the leukodystrophies, the story …
Visit the PMD Foundation website This family driven foundation will proactively serve those affected by Pelizaeus-Merzbacher Disease (the PMD community) by supporting programs of education, research, service and advocacy. We are dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social service, and genetic counseling; …
Visit the STOP ALD Foundation website The Stop ALD Foundation funds innovative new research to jump-start the process of developing new knowledge and new therapies, which must often proceed at an excruciatingly slow pace when only funded by government sources. We also work to educate the medical profession and the public about ALD, raising awareness in …