Community News


A Space for Caregivers

A Space for Caregivers

By: Allison Breininger | Mar 18th, 2020

One group of people we often think about but don’t often directly address is caregivers. All of the partners, parents, siblings, grandparents, and friends, we want you to know how vital you are.

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Topics: Stories

One Final Summit

One Final Summit

By: Bill McCorey | Feb 21st, 2020

Bill McCorey has spent the last decade climbing mountains all over the world to raise funds for FA research. In 2020, he takes on his final challenge.

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Topics: Stories

Words of encouragement for everyone transitioning from pediatric to adult care

Words of encouragement for everyone transitioning from pediatric to adult care

By: Mary-Beth Johnson | Feb 20th, 2020

Growing up and taking control of your care is one of the most important - and challenging - steps you will take in adulthood.

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Topics: Stories

What’s the most important relationship you have in the FA community?

What’s the most important relationship you have in the FA community?

By: Duncan Nunes | Feb 14th, 2020

A reflection on the personal connections that define us.

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Topics: Stories

Highlights from the 2019 Scientific Symposium

Highlights from the 2019 Scientific Symposium

Dec 18th, 2019

In September 2019, more than 200 researchers and clinicians in the FA community gathered in Chicago to share updates in research and care. Here are some of the highlights.

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Topics: Stories

Expeditions

Expeditions

By: Robin Lewis | Nov 6th, 2019

I’d like to tell you about a journey that changed my life forever. FA has taught me a couple of life lessons that you would expect to hear from a man late in his 90s.

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Topics: Stories