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  • 4H Leukodystrophy
    • Newly Diagnosed
    • FAQ
    • Glossary
  • About Yaya Foundation
    • Our Work
    • Board & Staff
    • Researcher Partners
  • Research
    • Research Library
    • Data Collection Program
  • News & Stories
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All (65) Blog Post (1)Video (30)Family Stories (10)Uncategorized (1)News (23)

ULF Conference – Mouse models of RNA polymerase III related Leukodystrophy 4H / Ian Willis

June 22, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference – Approaching Therapeutic Options for POLR3 Related Leukodystrophy

June 22, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference – Yaya Foundation 2022-25 Priorities and conclusion

June 20, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference – 4H Leukodystrophy and Disorders: Natural History Study / Dr. Bernard

June 15, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference – Yaya Foundation Research: Vision, Priorities, and Roadmap / Valerie Gregor

June 15, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference Introduction Part 2 – Christina Butterworth

June 10, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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ULF Conference – 4H Leukodystrophy and Natural History Studies / Nicole Wolf

June 5, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…

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Virtual Care & Disease Management Day: Opening

June 3, 2022

In the Opening of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Ron Garber, Yaya’s dad and foundation co-founder, reflects on his daughter’s diagnosis, the journey of…

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4H Leukodystrophy Care & Disease Management: Closing

May 14, 2022

In the Closing of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Executive Director Christina Butterworth discusses the day’s highlights and upcoming engagement opportunities with families and…

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4H Leukodystrophy Care & Disease Management: Combination of Rehabilitation and Adaptation

May 10, 2022

In session 8 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Gaeton Filion discusses a combination of rehabilitation and adaptation with families and individuals affected…

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First 4H Leukodystrophy Family Conference Draws Global Community Together

May 6, 2022

On April 22, 2022, The Yaya Foundation was proud to host its first 4H Leukodystrophy family conference, our Virtual Care & Disease Management Day. Together with experts from around the…

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4H Leukodystrophy Care & Disease Management: Bone Health

May 4, 2022

In session 10 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Annie Marie Sbrocchi of McGill University Health Centre discusses bone health with families and…

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4H Leukodystrophy Care & Disease Management: Spasticity Definition, Presentation, and Treatment

May 2, 2022

In session 6 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Marie-Emmanuelle Dilenge of McGill University discusses Spasticity Definition, Presentation, and Treatment with families and…

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4H Leukodystrophy Care & Disease Management: Introduction to Supportive Therapies

April 30, 2022

In session 4 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Keith Van Haren of Stanford discusses supportive therapies with families and individuals affected by…

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4H Leukodystrophy Care & Disease Management: Transfer to Adult Care

April 29, 2022

In session 12 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Roberta La Piana discusses transfer from pediatric to adult care with families and individuals…

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4H Leukodystrophy Care & Disease Management: Treatment of Movement Disorders

April 28, 2022

In session 7 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Inge Meijer discusses treatment of movement disorders with families and individuals affected by 4H…

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4H Leukodystrophy Care & Disease Management: Learning from Other Hypomyelinating Leukodystrophies

April 22, 2022

In session 4 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, Dr. Nicole Wolf of Amsterdam University Medical Center discusses what we can learn from other…

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4H Leukodystrophy Care & Disease Management: POLR3-related 4H Leukodystrophy & Disorders

April 22, 2022

In session 2 of Virtual Care & Disease Management Day, hosted by the Yaya Foundation, 4H expert Dr. Genevieve Bernard of McGill University Health Centre discusses POLR3-related Leukodystrophies with families…

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4H Leukodystrophy
Research

In everything we do, we’re working to speed progress toward a cure. Learn more about our ambitious research strategy.

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Our Ethos

Our Ethos

We are driven by the dream that one day, every child with 4H Leukodystrophy will have the chance to live a long, healthy life.

So we fight for these children by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital education resources and emotional support.

We won’t stop until we find a treatment and, ultimately, a cure.

about yaya foundation

Give Hope to a Child with 4H Leukodystrophy

Your generous donation funds critical research into life-changing treatments and a cure for 4H Leukodystrophy, as well as vital programs that connect, support and empower families affected by this rare disease. All it takes is a simple click.

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©2023 The Yaya Foundation for 4H Leukodystrophy / PO Box 8670, Minneapolis, MN 55408 / 501(c)(3) EIN: 82-3888108