Patrick’s PALS 23rd Annual Basketball Tournament Raises $140,000 for Fragile X Research

Patricks PALS Team Gray Champs

Patrick’s PALS has grown from a twelve-team tournament to a 36-team extravaganza! On four half-courts, 18 first-round games set teams on a path to the winners or losers bracket. After that, it was all about staying alive and avoiding elimination by not losing two games. In the end, two veteran teams faced off for the rights to ensure their names would be engraved on the PALS Trophy: the multiple-past-champion Kline Team and the always-in-the-mix Gray Team (pictured above). Gray entered the finals with one loss, so they needed to beat Kline twice. That they did to become the Champions of Patrick’s PALS XXIII!

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FRAXA Biotech Games, the Beginning of Something Great

On September 20, 2018, FRAXA Research Foundation held the First Annual FRAXA Biotech Games™. The event was a “friendly” competition between greater Boston biotech companies and affiliated industry partners and vendors in a series of fun backyard lawn games. 42 teams of 4 players each played cornhole, KanJam, ladder golf and bucketball. Our goal was to establish an annual event in Cambridge, MA, that would unite the biotech community for an afternoon of fun competition, and raise money for biomedical research. We look forward to the upcoming Biotech Games!

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One Person Can Make a Difference

When Ellen Skala, also referred to as Elle, contacted us in August 2018 about creating a personal fundraising campaign for FRAXA, we were excited about her interest in supporting our mission. Elle set a goal to raise $10,000 for Fragile X research by her birthday, and she committed to shaving her head if she met her fundraising goal!

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Hope for the Holidays Gala Helps Advance Fragile X Research

2018 Hope for the Holidays

On December 8, 2018, a sold-out crowd of 250 people gathered for the 3rd Annual Hope for the Holidays Gala at the Café Escadrille in Burlington, MA, to raise funds for Fragile X research. For the third year in a row, the Pierces presented a check for $100,000 to FRAXA Research Foundation. We are truly grateful for this ongoing, generous support of our mission to find effective treatments and ultimately a cure for Fragile X.

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Boys Basketball Fundraiser Kicks Off The Season of Giving

On Saturday morning, November 17, 60 boys, their parents and a bunch of volunteers gathered in Newton, MA for the 3rd annual 3 on 3 basketball tournament, sponsored by the Newton Athletic Association (NAA), a program of Newton Community Education. The event is a fun competition of teams of three players competing for bragging rights of which team is king of the local youth basketball program.

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14th Annual Fragile X Poker Run Raises $12,135 for Fragile X Research!

The 14th Annual Fragile X Poker Run was a resounding success. The previous fundraising record of $7,800 was eclipsed by >50%, coming in at $12,135!! This year a very special and moving moment occurred when Amber, who has cerebral palsy, was brought by her parents and positioned in front of the band. She was then serenaded by Mikey through many songs, culminating in Happy Birthday (her 20th). Not a dry eye in the crowd, including Amber and Mikey. Simply magical.

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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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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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Fragile X in the Forefront of International Conference

18th International Fragile X and Related Neurodevelopmental Disorders Workshop, Quebec, Canada

Today the 18th International Fragile X and Related Neurodevelopmental Disorders Workshop kicks off in Quebec, Canada. For the next six days, scientists from around the world will gather at this workshop to focus on recent breakthroughs in our understanding of Fragile X, autism spectrum disorders (ASD), and related neurodevelopmental disorders. This biennial meeting has been instrumental to the discovery of many disease-causing genes and the development of therapeutic strategies for these disorders.

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$75,000 Raised for Fragile X Research by Friends of FRAXA at our Fall Fling

On Thursday, September 7 over 150 friends of FRAXA joined us at the Smith Barn at the Peabody Historical Society for the second annual FRAXA Fall Fling. Together we raised over $75,000 for Fragile X research — including a hand-delivered check for $25,000! Families from as far away as Miami, Florida joined us, even with hurricane Irma approaching their home state. Unfortunately, Irma ambushed Weather Channel Storm Tracker and Fragile X parent, Jim Cantore.

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TD Bank invites Friends of FRAXA to Watch the Bruins

Friends of FRAXA, Bob Sweeney, President of the Boston Bruins Foundation

Fifty friends of FRAXA enjoyed an amazing night at the TD Garden in Boston on March 30. They gathered to watch the Boston Bruins take on the Dallas Stars. It was a great opportunity for us to unite the greater Boston Fragile X community. We were able to convene and thank some of our local families and introduce them to university and biotech scientists who are working to find a cure for Fragile X. The night was made available by a generous donation of the Garden View Room by TD Bank.

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Callum Cup 2017 Raised over $9200 for Fragile X Research

Callum Cup pic-2 2016

We are tremendously grateful to the Millburn United men’s soccer team, of Millburn, New Jersey, who held the 2017 Callum Cup on Sunday, July 2, 2017. They were honoring Callum Murphy, son of the team goalkeeper at Millburn United. Together with their friends and families, the team raised over $9000 for Fragile X research! This event was made possible by co-hosts Andrew Murphy and Nick Dawes. Donors, thank you all so much!

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