We’re All In This Together, One Day At A Time.

As many of you know, FRAXA’s mission is to find effective treatment options and ultimately a cure for Fragile X. Right now though, we know that we have to pivot. The Fragile X community has always been the center of our mission and today, there are other ways we can be helpful. We would like to host virtual gatherings that will benefit the Fragile X community and help us all feel connected.

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FRAXA Welcomes Elle to the Team!

Ellen Skala

Ellen Skala, known as Elle, has joined FRAXA Research Foundation as Program Coordinator. Elle is excited to work on the FRAXA team and we are excited to have her on board! She has experience in grant writing and personal fundraising campaigns. In her new role as program coordinator, Elle will communicate with FRAXA supporters throughout the country, connecting them to the mission and assisting them in fundraising and awareness-raising activities.

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20 Landmarks Will Light Up for Fragile X Awareness Day

Newburyport, MA (July 15, 2019) — Today, FRAXA Research Foundation announces that 20 buildings, bridges and landmarks across the United States and Canada will be illuminated teal on Monday, July 22, to celebrate International Fragile X Awareness Day. The goal of the initiative is to raise awareness of Fragile X syndrome, the most common inherited cause of autism and learning disabilities worldwide.

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Fragile X Brothers Two of the Pittsburgh Synagogue Massacre Victims

David and Cecil Rosenthal Fragile X Brothers killed at Pittsburgh synagogue massacre

Our hearts are broken for everyone affected by the horrible tragedy at the Tree of Life synagogue in Pittsburgh. This one hits very close to home as two of the victims, the Rosenthal brothers, Cecil and David had Fragile X syndrome.

“Cecil’s laugh was infectious,” said Chris Schopf, Achieva’s vice president of residential supports. He added, “David was so kind and had such a gentle spirit. Together, they looked out for one another. They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

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Brett Soars To Eagle

Over the years, Brett saw a lot of the older boys becoming Eagle Scouts and decided he wanted to get his Eagle Rank, too. Carl explained the process and Brett said, “Let’s do it”. Everything wasn’t smooth sailing and Brett encountered some obstacles. After Brett decided that he wanted to continue in scouting and get his Eagle Rank, the highest rank the Boy Scouts can achieve, we realized that there were some required merit badges that Brett would never be able to get because some of the requirements were just too difficult for him. The cool thing was that Boy Scouts offered an alternative path for special needs scouts.

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Fragile X Research Impacted by a Small Group of Thoughtful, Committed Citizens


Theirs was an effort by a small group of thoughtful, committed members of the Fragile X Association of Michigan (FXAM) to be sure. The entire project took months! But it was hard work well worth the effort. After writing and revising (and revising), FXAM was awarded a $35,000 grant which the Michigan Fragile X group will now direct to Dr. Todd’s ongoing Fragile X research involving CRISPR!

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Ringing the Bell at the New York Stock Exchange for Fragile X Awareness

ringing the bell at the NYSE

FRAXA Research Foundation was honored to be part of the opening bell ringing ceremony at the New York Stock Exchange (NYSE) on July 5, 2018. We were there to raise awareness for Fragile X along side the National Fragile X Foundation. FRAXA President Katie Clapp and Director of Community Relations Dave Bjork attended with over 30 Fragile X family members and friends, including 4 self-advocates. This was a great opportunity to raise awareness of Fragile X on a big stage at an iconic place. The event was also carried live on television on CNBC, giving FRAXA and Fragile X broad reach around the world.

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Takeaways from Fragile X Advocacy Day

In the first week of March I attended my first Fragile X Advocacy Day to meet with many of the Massachusetts delegation to Congress. While this was my first time advocating for Fragile X research, I’ve been a longtime lung cancer research advocate and have met with many of the same representatives in the past. It was a pleasure to meet with many of the families as my participation in Advocacy Day was in the spirit of “we are all in this together”.

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Impact of the Fragile X Community

At FRAXA Research Foundation, we are truly grateful for our Fragile X community and thousands of donors. We couldn’t keep moving the ball forward in research without your support. Each year FRAXA invests over $1 million in Fragile X research thanks to your support. Because we supported these three researchers, we were able to secure another $35 million in research aimed at identifying clinical trial outcome measures that will lead to human trials of promising treatments for those affected by Fragile X.

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FRAXA Annual Appeal Raised $760,000

gratitude Fragile X research

Thanks to your generous support, we surpassed our annual appeal goal of $600,000 and are one step closer to finding effective treatments and, ultimately, a cure for Fragile X syndrome. From November 6 to December 31, collectively we raised over $760,000 from over 1,000 donors! This means we will also receive the matching gift of $600,000 from the Sunshine Lady Foundation! We’d like to express our sincere gratitude to all of our donors who generously gave to FRAXA Research Foundation in 2017 and look forward to continuing the promising translational Fragile X research momentum in 2018.

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Fragile X Awareness Day Origins and a Tribute

July 22 is National Fragile X Awareness Day, but I’ll bet few know the history behind it.

In 2000, before there was such a thing as a Fragile X Advocacy Day, FRAXA Research Foundation and David Busby (husband to Mary Beth, father to two adult sons living with Fragile X, a member of FRAXA’s pioneering leadership team, and a prominent and politically well-connected DC lawyer) were running Fragile X advocacy in Washington, DC.

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