Fragile X Brothers Two of the Pittsburgh Synagogue Massacre Victims

Fragile X Brothers Two of the Pittsburgh Synagogue Massacre Victims

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

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

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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Takeaways from Fragile X Advocacy Day

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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Fragile X Awareness Day Origins and a Tribute

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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Turning 22 with Fragile X Syndrome – What’s Next?

Turning 22 with Fragile X Syndrome – What’s Next?

Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by this transition. Our son, Ryan, had been attending a residential school, New England Center for Children, for the previous 12 years. For almost all his waking hours, Ryan had one-on-one staffing and five additional staff nearby in case of behavioral outbursts. On community outings he was usually accompanied by at least three staff members. Now we were about to move him to Shared Living Collaborative (SLC) where he would have just one-to-one daytime staffing and two-to-one staffing in his residential placement, with no immediate, additional staff for help during a behavioral incident. We were tense and on edge about how this new arrangement would work.

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Rolling Stone Magazine: Luke’s Best Chance: One Man’s Fight for His Autistic Son

Rolling Stone Magazine: Luke’s Best Chance: One Man’s Fight for His Autistic Son

Rolling Stone Magazine published a powerful article by award-winning writer, Paul Solotaroff, featuring his son, Luke. Luke is 17 years old and has Fragile X syndrome. What will happen when Luke becomes an adult and no longer has a right to schooling? During his research, Paul visited the Shared Living Collaborative in Merrimac, MA. This is the program where my son, Andy, age 28, works (and plays) during his days. Perhaps it can serve as a model for other programs around the country.

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Resources for Families: Fragile X – A to Z and Medication Guide

Resources for Families: Fragile X – A to Z and Medication Guide

FRAXA Research Foundation is fortunate to attract volunteers and interns from universities far and wide. FRAXA has just four staff on the payroll (three of whom are part time), to keep expenses low and devote your donations to Fragile X research. That also means we are very grateful to our volunteers! This past summer we were joined at the FRAXA Newburyport, MA office by Emily Fluet, a student who had completed her freshman year at the University of St. Andrews in Scotland. Emily has transformed two FRAXA publications into online resources available to all: Fragile X – A to Z and Medication Guide for Fragile X.

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Students at WPI helping FRAXA Research Foundation

Students at WPI helping FRAXA Research Foundation

Undergraduate students at Worcester Polytechnic Institute (WPI) complete what is known as the Interactive Qualifying Project (IQP). Student groups work closely with local or national sponsors during their junior year to complete a project that benefits their community. Two student groups from WPI are working with FRAXA to provide research-based improvements to the FRAXA.org website, and to develop a mobile FRAXA app.

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What Treatments Work for FXTAS?

Many older family members in the Fragile X community are affected by FXTAS (Fragile X-associated Tremor/Ataxia Syndrome). We all hope that knowing the underlying cause of neurodegenerative symptoms in FXTAS will help in the development of specific treatments over the long term. In the short term, we would also hope that having a specific diagnosis would help us to identify particular available treatments which might be more effective than others.

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This Is My Brother, speech by Elizabeth Clark at FRAXA’s Fall X Ball

This Is My Brother, speech by Elizabeth Clark at FRAXA’s Fall X Ball

In a heartfelt, humorous and insightful speech, Elizabeth Higgins Clark imparts the inspiration and love she has received from her brother, David, who has Fragile X Syndrome. Fragile X is the most common form of genetically transferred intellectual disability. Clark gave the following speech in Danbury, Connecticut at the 11th Annual Fall X Ball benefitting the FRAXA Research Foundation.

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Darren’s Smile

Darren’s Smile – This is a very difficult post to write because it is about a son, Darren, who has passed away. Darren’s dad has written a memoir – a beautiful tribute to his son. Darren had Fragile X syndrome. He lived a rich life and was very much loved. Sadly he died because of a choking incident at the group home where he lived. There’s not much written about the risk of choking for people who have Fragile X, but I do wonder if it is a particular risk that we should remember.

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