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Fourth Community Meeting & Natural History Study Sign Up


We had an informative meeting this week hosted by Dr. Helen Chen and guest speaker Dr. David Bearden, who is distinguished pediatric neurologist and neurogeneticist from the University of Rochester. Dr. Bearden, who has been a valued collaborator with the YWHAG Foundation and serves on our research/advisory board, shared exciting updates about the upcoming Natural History Study for the YWHAG Genetic Mutation.

 

Please register for the Natural History study now here: https://ywhagfoundation.org/natural-history-study#enroll-natural-history-study


For those that were unable to attend or would like to rewatch the meeting a recording can be viewed here: https://us06web.zoom.us/rec/share/Gp6CsY2rtVUdQf-KSCgMpzYFGO5zgS6RQ04bLZNRrkpbyzddvWKGfhIIzdlbYHc6.sVDj98_V74wkFcEO

Passcode: 4!%McK7g

 

The Importance of the Natural History Study

 

The Natural History Study is a cornerstone of our research efforts, and its success relies on the active participation of families affected by the YWHAG genetic mutation. Here’s why your involvement is crucial:

 

- Understanding Disease Progression: By tracking health data over time, we can identify key patterns and milestones in the disease's progression, providing valuable insights for researchers.

- Guiding Research: The study’s findings will help pinpoint potential therapeutic targets, leading to the development of effective treatments and potentially a cure.

- Supporting Families: Comprehensive data collection will aid in managing the condition better, improving the quality of life for those affected.

- Building Awareness: Increased knowledge about the YWHAG mutation will drive more funding and interest, accelerating scientific breakthroughs.

 

We urge all families impacted by the YWHAG genetic mutation to sign up for the Natural History Study. Your participation is vital for advancing research and finding new ways to support and treat those affected by this rare condition.

 

Please register for the Natural history study now here: https://ywhagfoundation.org/natural-history-study#enroll-natural-history-study

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