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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Absher Family

Baby Emmalynn

Krabbe Disease (Transplant)

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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.

Amanda Anastasia

Believe Art by Amanda

Aicardi-Goutieres Syndrome (AGS)

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Belyew Family

Hunter’s Journey

Vanishing White Matter Disease (VWMD)

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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.

Branch Family

Sweet William’s Way with Krabbe

Krabbe Disease (Transplant)

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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.

Buck Family

Sam vs. VWM

Vanishing White Matter Disease (VWMD)

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Burroughs Family

Nico’s Warriors

Krabbe Disease (Transplant)

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Casey Family

Caring for Caroline

Metachromatic Leukodystrophy (MLD)

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Christie Family

Killian’s Journey

Metachromatic Leukodystrophy (MLD)

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Clausen Family

Bryces Battle

Krabbe Disease

 

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Drinkwater Family

Ronan Roars

Metachromatic Leukodystrophy (MLD)

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Ellis Family

Miracle for Cove

Krabbe Disease

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Feldt Family

Dawson Feldt

Krabbe Disease

To learn more about the Feldt Family and Kasey’s Podcast Episode, click here.

Fitzgerald Family

Hailey’s Dreams

Metachromatic Leukodystrophy (MLD)

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Gaston Family

Hugs for Hailey

Unspecified Leukodystrophy

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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.

Grujicic Family

Nikola Strong

Krabbe Disease

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Havlik Family

Team Reed

Vanishing White Matter Disease (VWMD)

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Heilman Family

Emilee’s Journey

Alexander Disease

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Hoffman Family

A Rare Ruby

Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (H-ABC)

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Hough Family

Aidan Hough

GM1 Gangliosidosis

Advocating for Aidan

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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.

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Huitema Family

Cade’s Journey

Krabbe Disease

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Kale/Angiuli Family

Sia Strong

Unspecified Leukodystrophy

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Kirbo Family

Cloud’s Krabbe Journey

Krabbe Disease (Transplant)

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Law Family

A Cure for Violet

GM1 Gangliosidosis

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Lebow Family

Praying Miracle for Mila

Krabbe Disease

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Ledbetter Family

Grayson’s Ladder

Alexander Disease

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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.

McKee Family

A Miracle for Ella Rose

Vanishing White Matter Disease (VWMD)

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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.

Mercer Family

Courage for Kiki

Unspecified Leukodystrophy

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Morse Family

Grayson’s Smile

Krabbe Disease (Transplant)

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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

Addi’s Fight

Metachromatic Leukodystrophy (MLD)

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Rasberry Family

A Miracle for Ollie

Metachromatic Leukodystrophy (MLD) (Gene Therapy)

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Reininger Family

Walk with Austin

Aicardi-Goutieres Syndrome (AGS)

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Robinson Family

Rowdy’s Rare ODDDyseey

Oculodentodigital Dysplasia with cerebral white matter abnormalities (ODDD)

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Rojas Family

Battling with Brandon

Adrenoleukodystrophy (ALD)

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Rose Family

Edison Rose Fighting VWM

Vanishing White Matter Disease (VWMD)

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Rosemier-Bentley Family

Hope for Riley

Canavan Disease

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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.

Schonbachler Family

Asher’s Army

4H Leukodystrophy

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Schroeder Family

Hope for Blaine

Krabbe Disease

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Sciera-Beutler/Stocki Family

Team David

Alexander Disease

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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.

Smith Family

Love for Lily

Krabbe Disease (Transplant)

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Staruk Family

Team Everett

Pelizaeus Merzbacher Disease (PMD) (Transplant)

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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.

Ward Family

Gemma’s Krabbe Journey

Krabbe Disease

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Webb Family

Miracles for Mabry Kate and Owen

Krabbe Disease (Transplant – Owen)

Webpage – TeamMKO

To learn more about the Webb Family and Christin & Kyle’s Podcast Episode, click here.

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Werner/Oagles Family

DJ Strong Krabbe Fighter

Krabbe Disease (Transplant)

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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.