Lick Leukodystrophy!

September is leukodystrophy awareness month - help us raise funds to Lick Leukodystrophy!

$6,161

92 supporters

$5,000 goal

Team Member

Noham Miguel

$380

by 17 supporters

$50 goal

My 2 year old Noham was recently diagnosed with Leukodistrophy caused by a very rare genetic syndrome known as TBCK.  He was a premie and has been a warrior ever since.  We started seeing delays in his development followed by what we called regression on his development starting at 4 to 5 months old.  At 6 months old, we were hearing from many doctors he will grow out of the issues he was presenting .  At the moment his skin was showing dermatitis and significant delays.  As all  he wanted to do was scratch, we decided to go  a different way and see a better Pediatrician and a Naturopathic doctor.  We started gaining understanding of Noham's Global Developmental Delay and quickly discovered he had Infantile Spasms and Epilepsy.  Ever since, his epilepsy has evolved and he gets quite a few Status Epilepticus a month.  We are a family of three an ocean away from our family, but we recognize how lucky we are by knowing what Noham's conditions are about.  We continue looking forward to a cure and better quality of life as we have many dreams of seeing Noham improve.

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Team Members

Noham

$380

17 supporters

Natasha

$4,185

47 supporters

Anne

$1,051

13 supporters

Team ULF Staff

$210

5 supporters

Halter/Davis

$110

4 supporters

Donna

$100

3 supporters

Emily

$100

2 supporters

Danielle

$25

1 supporter

Matthew

$0

0 supporters

Organizer

Created By

The United Leukodystrophy Foundation

EIN: 35-1557361

Story

September is leukodystrophy awareness month - and we want YOU to help us Lick Leukodystrophy! Start a team and tell your story to raise funds that will go towards our mission of hope for improved treatments and a cure.

Any amount raised will go further than you think, but we do encourage you to set a goal! The team that raises the most funds, and the team that has the most donors will get a special prize from the ULF!

Remember, you are not alone and the ULF community is not giving up. Together, we can Lick Leukodystrophy!

Pick Your Team!

$6,161

92 supporters

$5,000 goal

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The United Leukodystrophy Foundation

A 501(c)(3) organization

EIN 35-1557361