Events Recap Archives • Page 2 of 2 • Fragile X Research

FRAXA Biotech Games, the Beginning of Something Great

Dave Bjork Events Recap March 1, 2019December 6, 2019CBD, Fulcrum Therapeutics, Roche, Zygel

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!

One Person Can Make a Difference

Dave Bjork Events Recap February 15, 2019March 28, 2019

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!

Kathan Pierce Honored as a New England Patriots Difference Maker

FRAXA Research Foundation Events Recap January 7, 2019May 14, 2021Pierce Family Fragile X Foundation

FRAXA is proud to announce that one of our board members, Kathan Pierce, was recognized by the NFL’s New England Patriots and team owner Robert Kraft for her tireless volunteerism. We are grateful for Kathan’s contributions to FRAXA, and to the Patriots, who announced they are also awarding a $5,000 grant to FRAXA to support Fragile X research.

Hope for the Holidays Gala Helps Advance Fragile X Research

FRAXA Research Foundation Events Recap December 12, 2018December 12, 2018Pierce Family Fragile X Foundation

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.

Boys Basketball Fundraiser Kicks Off The Season of Giving

Dave Bjork Events Recap December 6, 2018December 6, 2018education, Patrick's PALS

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.

#GivingTuesday 2018 – Thanks to you!

Katie Clapp Events Recap November 30, 2018November 18, 2020

You did it! The Fragile X community never ceases to inspire us. Thanks to YOU, we raised OVER $50,000 on #GivingTuesday and our Board of Directors is matching that! We are so grateful for your help kick-starting our annual appeal.

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

Jimmy Charlton Events Recap September 28, 2018August 2, 2021sound

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.

$16,560 Raised for Fragile X Research at Callum Cup III

Andrew Murphy Events Recap September 5, 2018September 5, 2018

July was a great month for soccer. First, France won the World Cup, then 7 days later Millburn Football Club hosted the 3rd annual Callum Cup. Proceeds from the match were for raising funds for Fragile X research. This intra-club charity match has become the grande finale of the Millburn FC calendar, played in honor of Callum Murphy, the son of club goalkeeper, Andrew Murphy.

Niagara Falls went Teal for Fragile X Awareness

FRAXA Research Foundation Community • Events Recap August 13, 2018February 25, 2019

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.

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

FRAXA Research Foundation Community • Events Recap July 16, 2018April 8, 2022autism

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.

22nd Patrick’s PALS Basketball Tournament Raises $125,000 for Fragile X Research!

James & Pamela Vershbow Events Recap June 13, 2018June 15, 2018Patrick's PALS

The Patrick’s PALS 22nd Annual 3-on-3 Basketball Tournament benefiting FRAXA Research Foundation took place on Saturday, June 2, 2018, at the Buckingham Browne & Nichols School (BB&N) in Cambridge. 36 teams signed up and were squeezed into the 32-team, double-elimination format raising another $125,000 for Fragile X research!

FRAXA Funded Researchers Present at MA Fragile X Conference

FRAXA Research Foundation Erickson, Craig • Events Recap • Wilkinson, Carol April 9, 2018December 26, 2019AstraZeneca, AZD7325, education, EEG, Pierce Family Fragile X Foundation

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.

Impact of the Fragile X Community

Dave Bjork Community • Erickson, Craig • Events Recap • Huber, Kimberly • Richter, Joel • Warren, Stephen February 2, 2018November 22, 2021cancer, hyperexcitability, NIH

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.

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

FRAXA Research Foundation Community • Events Recap December 5, 2017November 22, 2021Boston Bruins Foundation

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!

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

FRAXA Research Foundation Cogram, Patricia • Contractor, Anis • Events Recap • Kooy, Frank • Lee, Jeannie • McGill University • Moine, Herve • Razak, Khaleel • Research Updates • Smith, Carolyn B. • Sonenberg, Nahum • Todd, Peter • Vanderklish, Peter October 29, 2017December 26, 2019amygdala, autism, bumetanide, DgkK, drug repurposing, drug tolerance, EEG, ERK, FDA, Fragile X Meeting, GABA, ganaxolone, glutamate, hyperexcitability, hypersensitivity, metformin, mGluR5, minocycline, mRNAs, NIH, Rett syndrome, seizure, sleep, sound

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, with brief updates from researchers investigating Fragile X.

Fragile X in the Forefront of International Conference

FRAXA Research Foundation Events Recap • Research Updates October 12, 2017June 18, 2018autism, Fragile X Research Foundation of Canada, Fulcrum Therapeutics, Ovid Therapeutics

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.

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

FRAXA Research Foundation Events Recap • Lee, Jeannie September 15, 2017February 21, 2018autism, Boston Bruins Foundation, Fulcrum Therapeutics, Ovid Therapeutics, Q-State Biosciences

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.

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

FRAXA Research Foundation Events Recap April 20, 2017December 26, 2019

On April 8, our fabulous friends of FRAXA in Ohio put on a great show as they held their Genes and Gems fundraiser in Columbus. Over 300 families, friends and supporters of Fragile X research attended. The event included an inspiring presentation by Fragile X physician and researcher, Dr. Craig Erickson, from Cincinnati Children’s Hospital.

TD Bank invites Friends of FRAXA to Watch the Bruins

FRAXA Research Foundation Events Recap April 14, 2017June 18, 2018Boston 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.

Callum Cup 2017 Raised over $9200 for Fragile X Research

FRAXA Research Foundation Events Recap April 6, 2017December 26, 2019

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!

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

FRAXA Research Foundation Community • Events Recap November 8, 2013December 26, 2019

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.