jada ann penprase

The United Leukodystrophy Foundation - dedicated to providing patients and their families
with information about their leukodystrophy - http://www.ulf.org/index.html

ULF Support community by Inspire - http://www.inspire.com/groups/united-leukodystrophy-foundation/

The European Leukodystrophies Association (ELA) - http://www.ela-asso.com/?q=node%2F1243&lang=en

The Stennis Foundation is devoted to raising MLD awareness and funding MLD research- http://www.stennisfoundation.org/web/    

Bethany's Hope Foundation is devoted to MLD research - http://www.bethanyshope.org/

Athena's Hope is involved with fundraising for MLD research - http://www.athenashope.org/

The MLD Foundation offers an e-mail support group for families affected by MLD - http://www.mldfoundation.org/

The Evanosky Foundation formed in 2005 by close friends of Bob and Sonya Evanosky after John, Christopher, and Jack Evanosky were diagnosed with Metachromatic leukodystrophy (MLD) - http://www.evanoskyfoundation.org/32.html

Founded by Augusto Odone - Lorenzo's Oil - The Myelin Project focuses on myelin-related disorders - http://www.myelin.org/

Hunter's Hope founded by former Buffalo Bill quarterback Jim Kelly after his son, Hunter, was diagnosed with
Krabbe's Disease - http://www.huntershope.org/site/PageServer

Jill Kelly - http://www.jillk.org/

VU University Medical Centre - The staff of the centre is available for second opinions of patients with a classified or unclassified white matter disorder- http://www.vumc.com/afdelingen/Children-White-Matter-Disorders/419715/

Aicardi-Goutières Syndrome Website-

Other Kid's Stories

Judson's Legacy
judson.s Legacy


Healing Anaya
healing anaya

The Foundation for Marisol’s Journey - has been established to honor the memory of Marisol Liliana O’Brien and support ongoing research in the cause, origin and cure of CACH (Vanishing White Matter Disease) Leukodystrophy - http://marisolfoundation.org/index.html

The M.O.R.G.A.N. Project established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy - http://themorganproject.org/index.html

Resources - http://themorganproject.org/2011-New%20Resources-updated14Feb11.pdf

The Leukodystrophy Alliance - http://leukodystrophyalliance.org/?page_id=45   

Carring 4 Krabbe Kids - http://www.caring-4-krabbe-kids.com/Equipment.html

Peace Love and Trevor - http://peaceloveandtrevor.com/

Marshall's Mob - http://marshallsmob.com/index.html

Judson's Legacy - http://judsonslegacy.com/Krabbe-Kids  

X-linked Adrenoleukodystrophy Database - http://www.x-ald.nl/

Jill Kelly Journal - http://www.jillk.org/journal/

Karis Almy - http://karisalmy.com/

Healing Anaya - http://www.healinganaya.blogspot.com/

Scarlett's Story
- http://www.scarlettsstory.com/  & Lawfully Blonde - http://lawfullyblondescarlett.wordpress.com/   

Liviana's and Giovani's Journey - http://livianasjourney.blogspot.com/

Sunshine in a Blue Cup - http://sunshineinabluecup.blogspot.com/ or https://www.facebook.com/pages/Sunshine-In-A-Blue-Cup/148334151849958?sk=info

Judson- http://www.storyofjudson.com/ or http://judsonslegacy.com/Krabbe-Kids

Clayton's Quest- http://www.bryceannalisesjourney.blogspot.com/

Ethan Marshall (Our Journey to Holland) - http://thejourneyweareon.blogspot.com

MLD Has a Face - http://mymldface.blogspot.com/

Peyton White - http://www.peytonwhitemld.blogspot.com/  or FB page: https://www.facebook.com/PromisesForPeyton

Mikey - http://mikeywiv.wordpress.com/

Jamie Gordon - http://www.dailystruggleswithmld.blogspot.com/   

Ryder- http://rydersjourney2009.blogspot.com/

Liam Christner - http://liamshappenings.blogspot.com/  

Truth Ferret: http://truthferret.blogspot.com/2011/08/questions-without-answers.html?spref=fb