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Virtual Care & Disease Management Day

Virtual Care & Disease Management Day April 22, 2022 All meeting sessions will be virtually Please join us for this free virtual conference The Yaya Foundation is proud to announce its upcoming 4H Leukodystrophy Virtual Care & Disease Management Day on Friday, April 22, 2022. Based on input from many individuals and families affected by...

Jamie and Layla Ride for Life

Spring-To-Spring Trail, DeBary, FL 32713 Spring-To-Spring Trail, DeBary, FL 32713, DeBary, FL

Join us on a family bike ride to help end 4H Leukodystrophy. We will be biking from Oak Tree area to Green Springs and Back on Spring-to-Spring Trail to raise money and awareness.

Data Collection Info Session

Via Zoom Link

Want to learn more about the 4H Data Collection Program? Join us for an info session on Friday, May 13th co-hosted by the Yaya Foundation and Rare-X, the data collection platform. Whether you're 1 of 60 families already enrolled or are thinking about participating, we look forward to answering all of your questions - big...

Zoom Hangout for #4HLFamilies

Via Zoom Link

The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. Along with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation, we also strive to organize valueable and engaging content for our family calls. This year, the Yaya Foundation is considering several unique meeting topics,...

Ride for a Cure

Florida

Ride for A Cure: Florida Motorcycle Ride Fundraiser Grandfather Jim St. John is taking to the road on his motorcycle to raise awareness for 4H Leukodystrophy in honor of his granddaughters, Jamie and Layla. A message from Jim about his Ride for a Cure: Here's your chance to finally tell me where to go! This...

YAYA FOUNDATION @ ULF CONFERENCE

Eaglewood Resort, Chicago IL 140 Nordic Road, Itaska

Join us at the Eaglewood Resort and Spa , Chicago, Illinois. Sessions are available in-person and virtually. Yaya Foundation is honored to sponsor registration fees for 4H families. Use the code yaya4h at checkout. About The Conference The Yaya Foundation is proud to be a sponsor of the ULF Conference, as well as to provide a 4HL...

Zoom Hangout for #4HLFamilies

Via Zoom Link

The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. Along with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation, we also strive to organize valueable and engaging content for our family calls. This year, the Yaya Foundation is considering several unique meeting topics,...

Fore for 4H Golf Event

Creekwood Golf Course 9691 Reed Road, Columbia Station, Ohio

In its seventh year, Fore for 4H is a great day with friends playing golf, and enjoying live entertainment, BBQ, and raffles!

Zoom Hangout for #4HLFamilies

Via Zoom Link

The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. Along with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation, we also strive to organize valueable and engaging content for our family calls. This year, the Yaya Foundation is considering several unique meeting topics,...

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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