Foundation to Fight H-abc

Dedicated to raising awareness to find cure for a progressive degenerative neurological condition called h-abc (Tubb4a) that affects children. #FightHABC

[Foundation to Fight H-abc @fighthabc]

WHAT IS H-ABC?

Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum )H-ABC) is a rare leukodystrophy. #Leukodystrophies are rare and progressive genetic diseases that affect the nerves, spinal cord, and brain.

Learn more: https://t.co/NYPkb4Ekb7
#FightHABC #HABC

[Foundation to Fight H-abc @fighthabc]

Living with h-abc leukodystrophy. September is Leukodystrophy awareness month. #habc #leukodystrophyawareness
#tubb4a

[Foundation to Fight H-abc @fighthabc]

@Zara_588 Double decker bus?

[Foundation to Fight H-abc @fighthabc]

Where we were vs where we are. https://t.co/lZRGKQ92cm.

[Foundation to Fight H-abc @fighthabc]

What is UFM1-related hypomyelinating leukodystrophy

#tubb4a
#foundationtofighthabc
#leukodystrophy

[Foundation to Fight H-abc @fighthabc]

H-abc explained! https://t.co/lZRGKQ92cm to learn more

[Foundation to Fight H-abc @fighthabc]

September is Leukodystrophy Awareness month

H-abc is a type of Leukodystropy

So then what is it?

[Foundation to Fight H-abc @fighthabc]

White matter disorders - Leukodystrophy. H-abc is one of over 5O. It entails Hypomyelination which means reduced or incomplete formation of myelin — the fatty, insulating layer that wraps around nerve fibers (axons) in the brain and spinal cord.

[Foundation to Fight H-abc @fighthabc]

Share to become Aware!

[Foundation to Fight H-abc @fighthabc]

Herein starts our outreach in September which is Leukodystrophy Awareness Month. This week we recognize our peers advocating for a cure and awareness around Leukodystrophies. Each and everyone of these organizations are heros!

[Foundation to Fight H-abc @fighthabc]

If you support advancing a cure for h-abc sign this petition to extend the priority review voucher. This voucher incentives investment in biotechs to develop drugs for a cure. https://t.co/Kb4OqshQ0p

[Foundation to Fight H-abc @fighthabc]

Our habc connection https://t.co/VSV7uxRJVx

[Foundation to Fight H-abc @fighthabc]

This is our journey. https://t.co/hXrLnBTGDt

[Foundation to Fight H-abc @fighthabc]

@BrittanyLynne

[Foundation to Fight H-abc @fighthabc]

https://t.co/J6UWhfZsCz

[Foundation to Fight H-abc @fighthabc]

A new friendship unravels as we meet others on the same journey! https://t.co/wuzbKYDRG4

[Foundation to Fight H-abc @fighthabc]

Join us at the ULF conference late June and get updates on our work. Be sure to register to join in person or virtually https://t.co/T3rBPFNKwo

[Foundation to Fight H-abc @fighthabc]

Can you add your signature? https://t.co/U5A1a25xmP via @Change

[Foundation to Fight H-abc @fighthabc]

@musk_news13 Happy birthday and God bless

[Foundation to Fight H-abc @fighthabc]

This can’t be shared enough. This is our oddessy

https://t.co/GuEytRjSDc

[Foundation to Fight H-abc @fighthabc]

@SecKennedy @HHSGov Thank you sir

[Foundation to Fight H-abc @fighthabc]

@SecKennedy @HHSGov Sir we need your attention on the rare disease space. Rare diseases collectively impact 30 million people mostly children. My child is one of 200 living with a rare disease that is progressive and killing kids living with it. Many of these conditions are caused by gene mutation