Community News


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.

Read More >

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.

Read More >

Topics: Stories

A Day at the 2019 FAdult Meeting with Mary-Beth

A Day at the 2019 FAdult Meeting with Mary-Beth

By: Mary-Beth Johnson | Oct 18th, 2019

At the FAdult Meeting in Chicago, Mary-Beth (a blogger & adult with FA), took over FARF's Facebook for a day and brought viewers behind the scenes at the meeting.

Read More >

Topics: Stories

A Pursuit in Genetics

A Pursuit in Genetics

By: Anne Starner | Oct 9th, 2019

This summer, I had the honor of working in Dr. Alan D’Andrea’s lab at the Dana-Farber Cancer Institute in Boston. The people who research our disease are just as amazing as the people who have it.

Read More >

Topics: Stories

How Our Family Channeled Grief Into Hope

How Our Family Channeled Grief Into Hope

By: Zachary and Rachel Gratz-Lazarus | Aug 13th, 2019

Well before her diagnosis of FA, our daughter was a model in resiliency for us. When she was finally born, we called her Mighty Mouse. Small, but resolute. Our model of resilience. Our Norah.

Read More >

Topics: Stories

A Mother’s Appeal

A Mother’s Appeal

By: Nancy Nunes | May 20th, 2019

As Duncan's mom, I wish I could give him more days. I’d give him mine if I could. But that’s not possible. I can only resolve to give some of my time to try to raise funds for research.

Read More >

Topics: Stories