The Myelin Project

#Research #Advocacy & #FamilySupport for #Adrenoleukodystrophy (#ALD) & #Adrenomyeloneuropathy (#AMN) since 1989. #SaveTheBoys #NewbornScreening

[The Myelin Project @Myelin_Project]

We're Joining Forces with ALD Connect - https://t.co/KDkjf3z5ee

[The Myelin Project @Myelin_Project]

Leukodystrophy mother, Marie-Michele Arpin from Canada, created a petition in support of newborn screening in New Brunswick, Nova Scotia, and Prince Edward Island for her son's rare leukodystrophy. Show your support and sign the petition today: https://t.co/ouZcTOaT2e.

[The Myelin Project @Myelin_Project]

Are you the parent of an ALD newborn? An online forum moderated by experienced ALD parents was just launched to support families like you. Learn more or join the conversation today: https://t.co/UKDKT1czHx.

[Brandon T. Todd #StayHomeWard4 @CMBrandonTodd]

@Myelin_Project I recently introduced the Newborn Screening Amendment Act of 2018, which adds Adrenoleukodystrophy (ALD) test to list of newborn screenings that DC hospitals must offer. It's a commonsense measure that I hope you'll support! Learn more: https://t.co/QpuCV83J5R

[The Myelin Project @Myelin_Project]

The new online forum for Parents of ALD Newborns is designed to, “offer support as you navigate through your babies first few years of life after a diagnosis of adrenoleukodystrophy.” https://t.co/UKDKT0UYiX

[The Myelin Project @Myelin_Project]

Magenta Therapeutics today announced treatment of the first patient with an inherited metabolic disorder in a Phase 2 study of MGTA-456, an expanded cord blood stem cell product. https://t.co/RhRzHrGxZG

[The Myelin Project @Myelin_Project]

Test All Babies for ALD - Vote Yes on Aidan’s Law - Sign the Petition! https://t.co/G78Kqbci23 via @Change

[The Myelin Project @Myelin_Project]

The AmazonSmile triple donation promotion ends on March 31st! Go to https://t.co/40fm8a72xy and Amazon donates to The Myelin Project. https://t.co/AoAy8gOFt6

[The Myelin Project @Myelin_Project]

It's time to #ShowYourRare! Share the official #RareDiseaseDay 2018 video now! https://t.co/iAqkmDWfZT

[The Myelin Project @Myelin_Project]

We received a progress report from Dr. Florian Eichler's AMN gene therapy study. Learn more: https://t.co/c4CDC27r0n.

[The Myelin Project @Myelin_Project]

Minoryx Therapeutics announced the initiation of phase 2/3 clinical trial of MIN-102 for the treatment of adrenomyeloneuropathy (AMN). Read more: https://t.co/lxY8StH9X5.

[The Myelin Project @Myelin_Project]

#DailyCalm @calm https://t.co/3MU6fOFS0k

[The Myelin Project @Myelin_Project]

#DailyCalm @calm https://t.co/3MU6fOFS0k

[The Myelin Project @Myelin_Project]

An incredibly touching new video... https://t.co/rLBH4TtkNG

[Hunter's Hope @HuntersHopeFDN]

Through our #Leukodystrophy Care Network (LCN), medical providers & affected families are linking arms to give our children the dignity, #hope, and medical care they deserve.

We need your help to get there - https://t.co/qYLqwetC6N

@HJKforever @JimKelly1212 @erinkelly12

[The Myelin Project @Myelin_Project]

Give the gift that keeps on giving. Support us this #GivingTuesday - Donate https://t.co/O5sLwyXqWP to make an impact on someone's life today.

[The Myelin Project @Myelin_Project]

Black Friday. Cyber Monday. Giving Tuesday. - https://t.co/Q9cviVR3Yt

[The Myelin Project @Myelin_Project]

The #OrphanDrug Tax Credit gives hope to 95% of ppl w/ #rarediseases who still don’t have a treatment. Don’t take away hope. #SaveOrphanDrugs

[The Myelin Project @Myelin_Project]

A wonderful thank you note we received a while back from Grady Lyons and family for their travel scholarship to the ULF Conference last year...

[The Myelin Project @Myelin_Project]

I stand w/ @RareDiseases & 200 other #raredisease advocacy organizations in support of the #OrphanDrug Tax Credit! Please don't repeal it! 30M Americans w/ #rarediseases rely on it.

[The Myelin Project @Myelin_Project]

#DailyCalm @calm https://t.co/3MU6fOFS0k