#Research #Advocacy & #FamilySupport for #Adrenoleukodystrophy (#ALD) & #Adrenomyeloneuropathy (#AMN) since 1989. #SaveTheBoys #NewbornScreening
USA
Joined November 2012
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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: bit.ly/2UxmMR8.
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: bit.ly/2qhZnG5.
The Myelin Project retweeted
@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: brandontoddward4.com/press-r…
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.” bit.ly/2qhZnG5
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. bit.ly/2GDqKk9
Test All Babies for ALD - Vote Yes on Aidan’s Law - Sign the Petition! chn.ge/2pPvmwX via @Change
The AmazonSmile triple donation promotion ends on March 31st! Go to smile.amazon.com/ch/52-15459… and Amazon donates to The Myelin Project. bit.ly/2E2zKgv
We received a progress report from Dr. Florian Eichler's AMN gene therapy study. Learn more: bit.ly/2rUaDvw.
Minoryx Therapeutics announced the initiation of phase 2/3 clinical trial of MIN-102 for the treatment of adrenomyeloneuropathy (AMN). Read more: bit.ly/2moOmRj.
An incredibly touching new video... xitter.cf/HuntersHopeFDN/status/…
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 - goo.gl/Nfbk9g
@HJKforever @JimKelly1212 @erinkelly12
Give the gift that keeps on giving. Support us this #GivingTuesday - Donate myelin.org/give/ to make an impact on someone's life today.
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
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...
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.
