First 4H Leukodystrophy Family Conference Draws Global Community Together

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 world, more than 40 families affected by 4H, also known as POLR3-related leukodystrophy, heard presentations on a variety of topics related to Supportive Therapies and Preventive Care, Movement Disorders, the benefits of Rehabilitation and Adaption, how to optimize Bone Health, the many facets of Palliative Care, transfer to Adult Care and much more.

 

Experts shared their presentations and took a lot of time and care with individual questions from those affected.

In addition to the informative presentations and time for Q&A, there was a Lounge that was available all day, including an hour before and after the start of the conference, for families to connect directly with each other, with the Foundation, or with some of the experts. This additional connection point drew several families to participate and share their stories.

The Yaya Foundation is very focused on including anyone and everyone who is affected by 4H, including non-English speakers. The Foundation sponsored live Spanish translation for the entire conference and, as such, met new families who relied on the translation.

While the Yaya Foundation had originally hoped that the family conference could be in-person and include clinic visits, the pandemic and international travel forced a change to a virtual format. The benefit to the virtual format is that more families from around the world were able to participate and the engagement from all was rich, compassionate, diverse, and impressive.

As Co-Founder and Board Chair Ron Garber said in his opening remarks, a convening of this size and scope “fills me with a great sense of hope. Coming together like this is a huge deal! It’s powerful and it presents a tremendous opportunity for us.”

To view recordings from these sessions, visit https://yayaconference.org/

 

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