Niagara Falls went Teal for Fragile X Awareness

Niagara Falls went Teal for Fragile X Awareness

On Sunday, July 22 at 10:00 pm, Niagara Falls was lit up teal to honor National Fragile X Awareness Day! We are extremely grateful to the Niagara Falls Illumination Board for making this happen. The teal lighting created a spectacular experience for all the spectators on both sides of the falls.

FRAXA co-founders Katie Clapp and Michael Tranfaglia made the drive from Massachusetts, and our web developer, Eric Welin, trekked to the falls with his entire family. Our afternoon meet up at Goat Island included Fragile X families from Canada, Illinois, Kentucky, New York and South Africa! Several happy Fragile X self-advocates could be seen running around with their siblings, while everyone enjoyed the Fragile X family reunion. It was great to see all of the different Fragile X shirts our friends wore.

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

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

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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FRAXA Funded Researchers Present at MA Fragile X Conference

FRAXA Funded Researchers Present at MA Fragile X Conference

On Saturday Boston Children’s Hospital (BCH) hosted a Fragile X educational conference, Success Strategies for Individuals and Families Impacted by Fragile X and two of our funded researchers, Dr. Craig Erickson, and Carol Wilkinson, MD, PhD, presented giving an update on their current Fragile X clinical trials. Both being funded by FRAXA.

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Impact of the Fragile X Community

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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$17,469 Raised by Friends of FRAXA Volunteers at Bruins Game

$17,469 Raised by Friends of FRAXA Volunteers at Bruins Game

Over 50 #FriendsofFRAXA showed up on the the day after Thanksgiving, November 24, at the Bruins game against the Pittsburgh Penguins to sell 50/50 raffle tickets. Our amazing volunteers sold $34,938 in tickets resulting in $17,469 donated to FRAXA research. This was the highest amount the Bruins sold this year in raffle tickets!

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In Their Own Words: Reports From the International Fragile X Workshop

In Their Own Words: Reports From the International Fragile X Workshop

The 18th International Fragile X and Related Neurodevelopmental Disorders Workshop in Quebec, Canada, was a great success, featuring Fragile X much more heavily than any previous meeting in this series! We asked our speakers to summarize their work in their own words. These brief updates from researchers investigating Fragile X.

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Fragile X in the Forefront of International Conference

Fragile X in the Forefront of International Conference

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

$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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FRAXA Fall Event – Sept 16, 2017 – Lagrangeville, NY

FRAXA Fall Event – Sept 16, 2017 – Lagrangeville, NY
15th Annual FRAXA Fall Jeans-for-Genes Join us to find a cure for Fragile X! Saturday, September 16, 2017 • 6:30 pm Crosswinds Equestrian Center 17 Crosswinds Lane LaGrangeville, NY 12540 Buy TicketsDonateFRAXA Fall Event Ron and I are so blessed to be surrounded by kind, generous friends who always seek to help us in our search for a cure for Fragile X Syndrome. This year we are thrilled to host our event in collaboration with Crosswinds Equestrian Center who is donating their facility and Half-Time Beverage who is donating refreshing craft beers. This will allow more money to benefit FRAXA Research Foundation! We know this new venue promises to be filled with family, friends, delicious food, and even a mechanical bull to help create wonderful memories. Jeans and comfortable shoes welcome! Tickets: $125 each Buy TicketsDonate If you have any questions or comments, please contact Amy Watkins at awatkins@fraxa.org.  Fall EventRead more

Patrick’s PALS 21st Annual Basketball Tournament

Patrick’s PALS 21st Annual Basketball Tournament

Play to Find a Cure for Fragile X PAL of the Year: Bob Socci New England Patriots Radio Announcer Special Guest: Bob Ryan Boston Globe Sportswriter Honorary Chair: Scott Shuster Special Friend of Patrick Saturday, June 3, 2017 8:00am – 3:00pm Buckingham Browne & Nichols School, Athletic Center 80 Gerrys Landing Rd Cambridge, MA 02138 PALS is a 3-on-3, 32-team double elimination tournament that raises funds in honor of those affected by Fragile X, including James & Pamela Vershbow’s son Patrick.Your registration fee ($50 per player) will cover breakfast, lunch, refreshments, t-shirt, contests with prizes, trophies and gift certificates for the finalists, and a silent auction. Donations and sponsorships gratefully accepted! Play in PALS XXI either as: A team – maximum of 4 players. A single – you will be assigned to a team short a player or looking for a fourth. For more information contact Jimmy Vershbow at Patricks.Pals@comcast.net.

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Genes and Gems Fundraiser raises $40,000 for Fragile X Research

Genes and Gems Fundraiser raises $40,000 for Fragile X Research
On April 8, our fabulous friends of FRAXA in Ohio put on another great show as they held their Genes and Gems fundraiser at the St. Charles Preparatory School in Columbus. It was a night to bring together over 300 families, friends and supporters of Fragile X research. The event included an inspiring presentation by the well-loved local Fragile X physician and researcher, Dr. Craig Erickson, from Cincinnati Children’s Hospital. From the great conversations, delicious food, and the silent and live auctions (including a ride on the Goodyear Blimp!), it was clear that everyone had a wonderful time. We want to thank all those who attended Genes and Gems and made generous donations to the FRAXA Research Foundation. A very special thanks to the Planning Committee for their tireless work and commitment to putting on this special event. The Barden Family The Heiman Family The Frederick Family The Lafferty FamilyRead more

TD Bank invites Friends of FRAXA to Watch the Bruins

TD Bank invites Friends of FRAXA to Watch the Bruins

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

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 possibly by co-hosts Andrew Murphy and Nick Dawes. Thank you all! Donors -- Thank you all so much! Kathleen Warnock Sean Mahoney Daniel Losik Martin Leys Alexia Bucciarelli James Padykula Margaret Fox Beth Hopkins James Bayne Eva Lesiak Scott Heiman Brian Levine Vlad Sali Jean-Luc DeguinesRead more

Patrick’s PALS raise $160,000 for Fragile X

Patrick’s PALS raise $160,000 for Fragile X
19th Annual Basketball tournament to raise funds for Fragile X research https://instagram.com/p/3eSfppjv5G Patrick's PALS 3-on-3 Basketball Tournament turned 19 on May 30, 2015! 32 teams suited up to play in the annual event that takes place at Buckingham Browne & Nichols in Cambridge. Named in honor of Patrick Vershbow, son of James & Pamela, Patrick's PALS has devoted itself to raising awareness of Fragile X, and raising money for FRAXA since 1997. It was a great day that celebrated what has been a successful campaign to date. Teaming up with James & Pamela are Jon Pressman, Bill Rome, Steve Savarese, Jim Marks and Scott Katz. Together, they have brought Patrick's PALS to new heights with respect to both recognition and fundraising. Patrick's PALS is proud and excited to contribute to the incredible work that FRAXA does, and looks forward to marking its 20th anniversary on June 4th, 2016! Patrick is now 22; he lives with his parents, sisterRead more

Events Gallery – Raising Funds to Find a Cure for Fragile X

Events Gallery – Raising Funds to Find a Cure for Fragile X
Boston Bruins Step up their Game for FRAXA The Boston Bruins Foundation has supported FRAXA many times, notably through 50-50 raffles at Bruins home games at Boston's TD Garden. Thank you to Bob Sweeney and everyone at the Boston Bruins Foundation for your ongoing support. March 30, 2017 was an amazing night at the TD Garden in Boston. Fifty friends of FRAXA gathered to watch the Boston Bruins take on the Dallas Stars. It was a great opportunity for us to unite the local Fragile X community in greater Boston. We were able to convene and thank some of our local families and introduce them to some scientists and biotech companies 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. Patrick's PALS Annual Basketball Tournaments Patrick’s PALS 3-on-3 Basketball Tournament turned 21 in 2017!Read more