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 email@example.com.
We look forward to connecting with you!