Co-Founder Kathy May returns after two decades to share her story. It’s about discovering new forms of treatments to enhance the mental, emotional and social growth of those affected by Fragile X. “And there will be a cure,” she said. “FRAXA is the reason for this hope. I have come full circle to FRAXA and feeling more hopeful than I have in many years.”
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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.
Read moreTurning 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.
Read moreRolling 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.
Read moreResources 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.
Read moreBoston Bruins Grant Funds New Fragile X Research
Bruins Foundation Executive Director Bob Sweeney pledging a $90,000 donation to FRAXA Research today at Shared Living Collaborative’s Gateway Farm in Merrimac, MA. The award will enable the organization to fund an entirely new research project aimed at developing new treatments for Fragile X, a genetic syndrome that is the most common inherited cause of autism.
Read moreStudents 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.
Read moreWhat 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.
Read moreThis 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.
Read moreMakenzie Cote’s Page
Makenzie is our lovely angel. Life is surely challenging for her and for us as parents raising a child with special needs. She has some developmental delays with a high level of anxiety. She loves going to school every day and she plays many sports like her peers in a league for children with disabilities. We are truly hoping for a cure to increase her quality of life like all the children deserve on this earth. We want her to be happy and proud of herself as much that we are of her. In 2008, our family in Canada started a fundraiser to raise money for the Fragile X research. They started making all kind of crafts and selling them. All the profits are sent to FRAXA in honor of our daughter who was diagnosed at 16 months old with Fragile X syndrome.
Read moreFRAXA Finances – the numbers 2010-2013
FRAXA has funded more than $22 million in research at universities all over the world. However, fundraising has been challenging over the past few years. But the driving force behind FRAXA is parents who are determined to help their children. We’ve kept overhead expenses very low in order to devote as many dollars as possible to Fragile X research.
Read moreDarren’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.
Read moreSpreading Sunshine
When a woman named Doris Buffett decided to embrace us, her warmth spread over us like a blanket, and the impact of her presence was immediate. As mothers and fathers of Fragile X children, we felt encouraged by the light Doris cast our way. We felt honored that the Sunshine Lady and her Foundation directors chose to invest in our children and our future. We were reinvigorated because of her generous financial support and her profound vision. Doris called FRAXA “The Gold Standard” in grass roots charities and donated more than $3 million to FRAXA in challenge grants. With our deepest gratitude, we are once again thanking Doris Buffett’s Sunshine Lady Foundation for her latest gift.
Read more160 scientists and dozens of parents attended the FRAXA Investigators Meeting
FRAXA Investigators Meeting was held from September 18-21, 2011 in Southbridge, MA. The goal: to find and implement treatments for Fragile X. Congratulations to Drs. Mark Bear, Emily Osterweil, and Elizabeth Berry-Kravis who won FRAXA research awards. The meeting report is here.
Read moreDoris Buffett’s Challenge Grant to FRAXA: Over $1.5 Million for Research!
In the Spring of 2007, Doris Buffett, president of the Sunshine Lady Foundation, challenged FRAXA to raise $500,000 in new funds by November 1 which she’d match. The grand total of new donations received was $1,424,562, with an additional $98,755 in pledges payable by March 1st, for a total of $1,523,317! Together with Ms. Buffett’s initial $500,000 gift, FRAXA received over $3.5 million in new money — all for research aimed at curing or treating Fragile X. Thanks so very much to all of you who helped make this happen. More than 2600 people donated toward the Challenge – it is a true grass-roots community success.
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