Tag Archives: #4HLFamilies

Join Us September 19th for the Next #4HLFamilies Call

The next #4HLFamilies call hosted by the Yaya Foundation is scheduled for Sunday, September 19th at 4:00 pm ET / 1:00 pm PT. Please join us for:

  • updates from the Foundation
  • discussion on a variety of 4H-related topics, led by Tammy Bock
  • to connect with others in our community

Please use this link to register: https://yayafoundation4hl.kindful.com/register/zoom-hangout-for-4hlfamilies-sunday-september-19th-2021

We look forward to seeing you! If you have questions or topics for our call, please email christina@yayafoundation4hl.org.

#4HLFamilies Zoom Features Family Stories

On July 18, 2021, three parents of children affected by 4H (POLR3-Related) Leukodystrophy shared their children’s and families’ stories. They discussed the stories of their diagnoses, challenges and successes, and key choices they’ve made in their children’s medical care. Their stories highlight the broad spectrum in the effects of 4H and the resilience of our patient and families community.

Following the #4HLFamilies stories, parents discussed questions they have about particular care choices they’ve made or are considering.

Ron Garber from the Yaya Foundation also shared updates about the recently launched 4H Leukodystrophy Data Collection Program, an exciting upcoming grant announcement, and preliminary plans for a 4H Family and Scientific Conference in 2022.

Click to see the recording of the #4HLFamilies call:

Please join us for the next #4HLFamilies Zoom on Sunday, September 19th at 4:00 pm ET / 1:00 pm PT.

Whether you are newly diagnosed or have been caregiving for someone affected by 4H for years, all are welcome to the Yaya Foundation’s bi-monthly #4HLFamilies Zoom Hangouts. Please register and join us at the next discussion on Sunday, September 19th.

Once registered, you will receive an email with Zoom details. Have questions or an idea about an upcoming #4HLFamilies topic? Email info@yayafoundation4hl.org.

We look forward to connecting with you!

Next #4HLFamilies Zoom Hangout is Sunday, July 18th

The Yaya Foundation hosts #4HLFamilies Zoom Hangouts bi-monthly to gather our 4H Leukodystrophy community together on a regular basis. Foundation updates and priorities are shared with families as well as engagement opportunities such as participating in research or volunteering with the foundation.

Perhaps most important to these Zoom Hangouts is the chance for families affected by 4H to gather and share with each other.

Please join us this Sunday, July 18th at 4:00 pm ET / 1:00 pm PT for the next #4HLFamilies Hangout.

After an update on the 4H Leukodystrophy Data Collection Program, 4H caregiver Tammy Bock will kick off a discussion with some of our community’s “veterans” to share their stories and answer questions. The group will also discuss self care.

Once registered, you will receive an email with Zoom details. Whether you’re a 4H veteran or newly diagnosed, we look forward to connecting with you!

The 4H Leukodystrophy Data Collection is Open!

Participate in Research via Data Collection

The Data Collection Program is open and we invite you to participate by sharing your data, which is critical for research.

When you participate in data collection, sometimes called a disease or patient registry, you’ll help accelerate research and the development of new drugs and other therapies.

Collecting data is an essential step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities.

To share your data, please visit the Data Collection portal:

On a recent family call, Dr. Nicole Wolf, one of the world’s leading clinician scientists of 4H Leukodystrophy spoke to the importance of data collection. She mentioned that this data informs the natural history of a disease and can be helpful in several ways, including:

  • Counseling families what to expect of the disease
  • Understanding the basic disease mechanisms
  • Evaluating the effect of treatments
  • Quickly identifying possible clinical trial candidates

To hear more about the importance of data collection and about our partner, RARE-X, a 501(c)3 nonprofit, you are invited to watch our Info Session on this topic:

Launching the 4H Leukodystrophy Data Collection Program

Register for Info Session to Learn More

Collecting data is an essential first step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities.

On a recent family call, Dr. Nicole Wolf, one of the world’s leading clinician scientists of 4H/POLR3-related Leukodystrophy spoke to the importance of data collection. She mentioned that this data informs the natural history of a disease and can be helpful in several ways, including:

  • Counseling families what to expect of the disease
  • Understanding the basic disease mechanisms
  • Evaluating the effect of treatments
  • Quickly identifying possible clinical trial candidates

Launching on June 21st, the Yaya Foundation is excited to announce a new 4H/POLR3-related Leukodystrophy Data Collection Program (also called a disease registry). The Foundation has partnered with leading rare disease data collection experts RARE-X.

To learn more about the Data Collection effort and benefits, please register for an upcoming Information Session on June 16th.

To hear more from Dr. Wolf on the importance of data collection, you are invited to watch her presentation on this topic: