#leukodistrophy
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allyann.bsky.social
#diabetes, #T1D, #AIDS, #HIV, #adenomyosis, #coeliacdisease, #leukodistrophy, #TrigeminalNeuralgia, #Arachnoiditis, #asthma, #HereditaryAngioedema, #spondylitis, #axSpA, #nraxSpA, #axialspondyloarthritis, #ankylosingspondylitis, #hashimotos, #brainInjury,

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December 2, 2024 at 4:34 AM
stoprfkjr.bsky.social
Kennedy did something good. Credit where credit is due.

I don't know much about DMD but know a lot about leukodistrophy. I have it.

Early detection of MLD can save lives.
hhsofficial.bsky.social HHS @hhsofficial.bsky.social · Dec 17
Today, Secretary Kennedy approved the addition of Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP) following scientific review and public comment.
December 17, 2025 at 12:05 AM
originalsunshine.bsky.social
They were about to push all states to start infant testing for leukodistrophy (like MLD and ALD) which is exactly the kind of rare disease we are hoping this treatment can cure.
May 16, 2025 at 8:29 PM
epsteinweb.bsky.social
EFTA01110713.jpg
#epsteinweb #efta01110713
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EFTA01110707 | EFTA01110713 LEONE, Paola 2013 2013 2013 Grand Round-Neurology, Hackensack UMC, NJ European Leukodystrophy Association, Paris NIH Recombinant DNA Advisory Committee, Bethesda, MD United Leukodistrophy Foundation, IL INVITED SPEAKER - FUNDRAISING EVENTS 2002 2002 2003 2003 2003 2004 2005 2005 2006 2007 2009 2010 2010 2011 2012 Jacob's Cure — Fundraising Bowling Event, Strike Out Canavan Disease, NY Canavan Research Foundation — Tennis Tournament, a Jacob's Cure — Fundraising Bowling Event, Strike Out Canavan Disease, NY Canavan Research Illinois, Annual Event, IL Canavan Research Foundation — Golf Tournament, CT As Daylight Breaks — Documentary Release, NY Canavan Research Foundation - Golf Tournament, CT Jacob's Cure - Fundraising Bowling Event, Strike Out Canavan Disease, NY Women For Stem Cells Research - StemCellebration Foundation, NY Jacob's Cure - Lucky Magazine Event, LA Saving Lavi Life Fundraising Event — Tel Aviv, Israel Canavan Research Illinois, Annual Fundraising Event, IL Jacob's Cure, Fundraising Event, Dream Big Gala, NY Canavan Research Illinois, Annual Fundraising Event, IL Canavan Research Illinois, Annual Fundraising Event, IL CONFERENCE ORGANIZER & CHAIR 2000 2005 2008 2011 Neurodegenerative Diseases Symposium, PA American Society of Gene Therapy, Symposium, St. Louis, MI Canavan Research Summit, White Plains, NY Canavan Research Summit, Harrison, NY Institutional Review Board Protocols: Institutions: Cooper Hospital (NJ), UMDNJ (NJ), Children's Hospital of Philadelphia (PA) Title: Gene Therapy of Canavan Disease using AAV-ASPA Role: Research P.I. at Cooper Hospital and UMDNJ; Co-PI at CHOP. Completed Institution: Cooper University Hospital (NJ), Title: Use of Lithium for treatment of patients with Canavan Disease Role: Research P.I. Completed Institution: Cooper University Hospital (NJ) Title: Use of Buspirone for treatment of patients with spinocerebellar ataxias Role: Co-Investigator Completed 7 of 22 EFTA01110713
May 9, 2026 at 7:15 PM
originalsunshine.bsky.social
Or just #leukodistrophy to be more inclusive
November 10, 2024 at 2:37 AM