Families affected by a Leukodystrophy share their stories every day on social media. Their voices are unique, informative, and important and give a glimpse into the reality of living with a Leukodystrophy.
Abner Family
Katelynn Abner
Metachromatic Leukodystrophy (MLD)
To learn more about the Abner Family and Kristal’s Podcast Episode, click here.
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Agarand Family
Noah’s Gene Therapy Treatment Journey
Adrenoleukodystrophy (ALD) (Transplant)
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Allen/McAdams Family
Julie Allen and Tyler McAdams
Metachromatic Leukodystrophy (MLD) (Transplant)
To learn more about the Allen/McAdams Family and Julie’s Podcast Episode, click here.
Blackwell Family
Ezra Blackwell
Krabbe Disease (Transplant)
To learn more about the Blackwell Family and Karlita’s Podcast Episode, click here.
Blanchard Family
Jace and Joelle Blanchard
Cerebrotendinous Xanthomatosis (CTX)
To learn more about the Blanchard Family and Bobbi’s Podcast Episode, click here.
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Boden/Miller Family
Team Jaxtien
Metachromatic Leukodystrophy (MLD) (Transplant)
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Bourassa Family
Nicholas and Joshua Bourassa
Krabbe Disease (Transplant – Joshua)
To learn more about the Bourassa Family and Becky’s Podcast Episode, click here.
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Brackbill Family
Tori Brackbill
Krabbe Disease
To learn more about the Brackbill Family and Lesa’s Podcast Episode, click here.
Broadbent Family
Extraordinary Emma Grace
Chaserr IncRNA Leukoencephalopathy
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Brooks Family
Eden Brooks
Metachromatic Leukodystrophy (MLD)
To learn more about the Brooks Family and Beth’s Podcast Episode, click here.
Feldt Family
Dawson Feldt
Krabbe Disease
To learn more about the Feldt Family and Kasey’s Podcast Episode, click here.
Goodin Family
Grant Us Grace
Multiple Sulfatase Deficiency (MSD)
To learn more about the Goodin Family and Tonya’s Podcast Episode, click here.
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Greene/Shell Family
Dalton and Anthony Shell
Krabbe Disease
To learn more about the Greene/Shell Family and Dianna’s Podcast Episode, click here.
Hoffman Family
A Rare Ruby
Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (H-ABC)
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Hughes/Tucker Family
Myles Tucker
4H Leukodystrophy
Myles is 4 years old and lives in the UK with his mom Georgia. Myles is affected by the POLR3B mutation of 4H Leukodystrophy.
Levasheff Family
Judson Levasheff
Krabbe Disease
To learn more about the Levasheff Family and Christina’s Podcast Episode, click here.
Marcucci Family
Madison Marcucci
Rare Chromosome Deletion
To learn more about the Marcucci Family and Kelly’s Podcast Episode, click here.
Martinez/Galindo Family
A Miracle for Marcus and Mariah
Krabbe Disease (Transplant)
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May Family
Dylan May
Krabbe Disease
To learn more about the May Family and Amy’s Podcast Episode, click here.
McVann Family
One Tough Cookie: Olivia’s MLD Journey
Metachromatic Leukodystrophy (MLD) (Transplant)
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Measles Family
Scarlett Measles
Krabbe Disease (Transplant)
To learn more about Scarlett and her Podcast Episode, click here.
Obryan Family
Hope for Makenzie
Metachromatic Leukodystrophy (MLD) (Transplant)
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Phillips Family
Nick Phillips
Adrenoleukodystrophy (ALD)
To learn more about the Phillips Family and Valerie’s Podcast Episode, click here.
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Priest Family
Priest Family Strong
Metachromatic Leukodystrophy (Transplant – Bryce & Izaiah)
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Purschke Family
Knockout ALD
Adrenoleukodystrophy (ALD) (Transplant)
Visit their website here.
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Rasberry Family
A Miracle for Ollie
Metachromatic Leukodystrophy (MLD) (Gene Therapy)
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Robinson Family
Rowdy’s Rare ODDDyseey
Oculodentodigital Dysplasia with cerebral white matter abnormalities (ODDD)
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Rowland Family
Hope4Aubrie
Mitochondrial Disease-Leukoencephalopathy with ovarian failure (LKENP)
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Schmitt Family
Jimmy Schmitt
Adrenoleukodystrophy (ALD)
To learn more about the Schmitt Family and Sheila’s Podcast Episode, click here.
Sereno Family
Sereno Warriors
Metachromatic Leukodystrophy (MLD) (Transplant)
To learn more about the Sereno Family and Lina’s Podcast Episode, click here.
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Shaw Family
Nala & Teddi’s MLD Journey
Metachromatic Leukodystrophy (MLD) (Teddi – Gene Therapy)
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Shullanberger Family
Bryleigh Shullanberger
Metachromatic Leukodystrophy (MLD)
To learn more about the Shullanberger Family and Kaprice’s Podcast Episode, click here.
Wagner Family
Emily Rose’s Journey
HBSL – Hypomyelination of the Brainstem with Spinal cord involvement and Leg spasticity
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Wallace Family
Jackson Wallace
Krabbe Disease
To learn more about the Wallace Family and Jenna’s Podcast Episode, click here.
Webb Family
Miracles for Mabry Kate and Owen
Krabbe Disease (Transplant – Owen)
To learn more about the Webb Family and Christin & Kyle’s Podcast Episode, click here.
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White Family
Moving with Meris – Our Journey with Alexander Disease
Alexander Disease
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Wilson Family
Marshall and Michael Wilson
Krabbe Disease (Transplant – Michael)
To learn more about the Wilson Family and Tammy’s Podcast Episode, click here.