April 2025
Cape Coral Touch-A-Truck 2025
This is a family-friendly event hosted by the EHL Fragile X Foundation where kids of all ages can explore and ask questions about their favorite vehicles such as Cape Coral Rescue Fire Truck, Lee County Emergency Medical Ambulance, Cape Coral Police BMW Motorcycles, and the Florida Forestry Swamp Buggy to name a few.
May 2025
Patrick’s PALS 29th Annual 3-on-3 Basketball Tournament & Community Celebration
Join Patrick's PALS Basketball Tournament and Family Fun Day while supporting a great cause! The annual tournament brings together all ages for a day of fun and friendly competition, with all proceeds going to benefit FRAXA Research Foundation's mission to find effective treatments and ultimately a cure for Fragile X syndrome.
July 2025
World Fragile X Day
World Fragile X Day celebrates families impacted by Fragile X and highlights progress of research to find a cure. On World Fragile X Day we shine a light on Fragile X by illuminating monuments and landmarks around the world. We gather with friends and family to celebrate loved ones who shine in the face of Fragile X.
August 2025
20th Annual Fragile X Poker Run
Ride the scenic Blue Ridge Parkway over 3 states on beautiful mountain roads, highlighted by an 8-9 mile stretch famously known as "The Snake" (US 421), raising funds for Fragile X research along the way. Wrap up with a live music celebration!
Past Events
December 2024
Fragile X Family Conversations: Sharing, Learning, Supporting
Join FRAXA’s Fragile X Family Conversations on Dec 12 at 12:00 pm to connect with families, share experiences, and gain insights on the Fragile X journey.
Callum Cup VIII
Join the Callum Cup VIII on Dec 8, 2024, at Millburn High for a day of soccer & community, raising funds for Fragile X research. Spectators & players welcome!
November 2024
Volunteer for FRAXA at the Boston Bruins Game
Join us on Thursday, November 21 to help raise funds for Fragile X research by volunteering when the Boston Bruins host the New Jersey Devils. At each home game, the Boston Bruins Foundation hosts a 50/50 raffle with half the proceeds going to a lucky winner and the other half going to a worthy charity. FRAXA Research Foundation is incredibly fortunate to be the featured charity.
SOCAL: Overview of the RECONNECT Clinical Trial, CBD in FXS, and Q&A with Dr. Kristen Bzdek
Join FRAXSOCAL for an insightful Zoom event with Dr. Kristen Bzdek, Senior Medical Director at Harmony Biosciences and Medical Lead of the ZYN002 program for Fragile X syndrome. Dr. Bzdek will give an overview of the RECONNECT trial and answer questions. Don’t miss this opportunity to learn more!
Southern California Bowling Family Fun Day
Join FRAXSOCAL for Family Fun Day with bowling, pizza, and community at California State Fullerton on Sunday, November 17, 2024, from 1-3:30 pm! This free event is open to those affected by Fragile X Syndrome and their immediate family. Located at Titan Bowling in the Titan Student Union, with free parking available.
September 2024
JT’s Family Fun Night for Fragile X 2024
Please join us for a Family Fun Night for Fragile X on Saturday, September 14 at the Sardina Dental Group. Stop by anytime 4pm-7pm that day. We will have Carmel Apple Dipping, Face Painting, Fox Meadows Ice Cream, Bounce House, Lawn Games, Raffles and more!
August 2024
19th Annual Fragile X Poker Run
Ride the scenic Blue Ridge Parkway over 3 states on beautiful mountain roads, highlighted by an 8-9 mile stretch famously known as "The Snake" (US 421), raising funds for Fragile X research along the way.
July 2024
World Fragile X Day
World Fragile X Day celebrates families impacted by Fragile X and highlights progress of research to find a cure. On World Fragile X Day we shine a light on Fragile X by illuminating monuments and landmarks around the world. We gather with friends and family to celebrate loved ones who shine in the face of Fragile X.
Fragile X Syndrome: The Anxious Brain
Please join Carrie Buchanan, MD, Fragile X Program Director at Greenwood Genetic Center, for a webinar on World Fragile X Day, July 22, 2024, at 11 AM ET. She will discuss how individuals with Fragile X experience high levels of anxiety, which can manifest in many different ways.
Silicon Valley Sunshine Interact Club Fragile X Fundraiser
The Silicon Valley Sunshine Interact Club is hosting a fundraising event in celebration of World Fragile X Day, aiming to raise funds and awareness for Fragile X and the research being conducted on it. We are offering a webinar on July 14th at 2 PM PST with Katie Clapp, the founder of FRAXA. We will host booths at local Palo Alto farmers' markets the weekend before World Fragile X Day.
June 2024
Patrick’s PALS 28th Annual 3-on-3 Basketball Tournament & Community Celebration
Join Patrick's PALS 3-on-3 basketball tournament and showcase your skills on the court while supporting a great cause! The annual tournament brings together basketball enthusiasts of all ages for a day of fun and friendly competition, with all proceeds going to benefit FRAXA Research Foundation's mission to find effective treatments and ultimately a cure for Fragile X syndrome. New This Year: Patrick's PALS is expanding the day for those not interested in playing or watching basketball.
May 2024
2024 FRAXA Charity Golf Tournament
Join us at the Bradford Country Club in Haverhill/Bradford, MA, on May 24, 2024 for our Annual Charity Golf Tournament.
FRAXA Research Q&A Webinar
Please join FRAXA co-founders, Katie Clapp and Dr. Michael Tranfaglia, for a Research Q&A via Zoom on Thursday, May 23, 2024 at 12:00 pm (noon) ET
Gordon Research Conference 2024 Fragile X and Autism-Related Disorders
The Gordon Research Seminar on Fragile X and Autism-Related Disorders is a unique forum for graduate students, post-docs, and other scientists with comparable levels of experience and education to present and exchange new data and cutting edge ideas.
Gordon Research Seminar 2024 Fragile X and Autism-Related Disorders
The Gordon Research Seminar on Fragile X and Autism-Related Disorders is a unique forum for graduate students, post-docs, and other scientists with comparable levels of experience and education to present and exchange new data and cutting edge ideas.
July 2023
World Fragile X Day Twitch Stream with Zae
Hey, gaming fam! Check out an insane Twitch stream fundraiser hosted by Zae for World Fragile X Day! From July 22-24, 8pm to midnight EST, Zae will be grinding through Monster Hunter: World (Iceborne DLC), Overwatch 2, Valorant, Pokemon Heartgold,
April 2023
Cape Coral Touch-A-Truck 2023
This is a family-friendly event hosted by the EHL Fragile X Foundation where kids of all ages can explore and ask questions about their favorite vehicles such as Cape Coral Rescue Fire Truck, Lee County Emergency Medical Ambulance, Cape Coral Police BMW Motorcycles, and the Florida Forestry Swamp Buggy to name a few.
September 2022
8th Annual 5K Walk for Fragile X Syndrome and Raffles
Darlene and Pat are hosting their 8th 5K Walk for Fragile X Syndrome on September 18, 2022 in Derry, NH to raise funds for Fragile X research and increase awareness.
July 2022
Flatbread Artisan Pizza Benefit
Join us for a fun evening of eating the Flatbread Company's amazing pizza and raising money for Fragile X research!
June 2019
6th Annual Fragile X Cornhole Tournament
Join us for the 6th Annual FRAXA Cornhole Tournament in Frederick, Maryland hosted by Dan, Jodie, Julianne and Jackson Grove. Dan and Jodie's son Jackson (10) was diagnosed with Fragile X syndrome at the age of 3 and at that time neither them, their friends, family members or local school system knew anything or had even heard about Fragile X. They wanted to help with the awareness efforts and research. As they learned more about FRAXA Research Foundation, they wanted to do all they can to help the amazing efforts in awareness, coping and research towards effective treatment and ultimately a cure!
October 2018
Chicago Marathon run in Honor of James
Gail O'Mara is running the 2018 Chicago Marathon to recognize and honor the efforts of her delightful grandson James, who with undaunted spirit has met the challenges of living with Fragile X.
August 2018
Pottery Fundraiser Opening Reception
Sally Ann Endleman will be exhibiting her pottery for the entire month of August, with an opening reception on August 9 from 5 pm to 7 pm. Several of her one of a kind pieces will be on display and for sale. She will also be holding a fundraiser for FRAXA: a selection of pottery will be gifted to individuals contributing to this cause.
April 2018
Dash for Bash!
Like other boys with Fragile X syndrome, Bash is hoping for an effective treatment and ultimately a cure. I am hoping to assist in this research by running my first marathon on April 8, 2018. Please sponsor me to fund research through the FRAXA Research Foundation.