Today, February 28, we mark Rare Disease Day, a day dedicated to raising awareness about rare diseases and highlighting the need for continued research and collaboration. At FRAXA Research Foundation, we are committed to advancing research on Fragile X syndrome, one of the most common rare diseases worldwide.
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$100,000 Donor Matching Challenge From The Robert & Ardis James Foundation
We are thrilled to announce FRAXA Research Foundation’s most significant and unique matching challenge of the year, thanks to the Robert & Ardis James Foundation. This challenge will help us bring top new talent to Fragile X research.
Read moreA Note of Thanks and Hope on This Giving Tuesday
Why is Fragile X research so important? Every advance in Fragile X brings us all closer to discovering treatments for autism and other brain disorders. We are truly grateful to everyone who has helped FRAXA fund groundbreaking research. Thanks to you, we have hope.
Read moreFMR1 Renamed to Fragile X Messenger Ribonucleoprotein 1
The efforts of the European Fragile X Network (EFXN) have led to the renaming of the FMR1 gene to “Fragile X Messenger Ribonucleoprotein 1” gene and the Fragile X protein, FMRP, to “Fragile X Messenger Ribonucleoprotein.” Families around the globe are celebrating the news as a significant step forward for acceptance and the removal of a term that evokes many negative feelings.
Read moreCape Coral Touch-A-Truck, Free, Family-Friendly Event
The EHL Fragile X Foundation hosts an annual Touch-A-Truck in Cape Coral, Florida. This free hands-on family event provides a unique opportunity for children and adults alike to ask questions and explore vehicles of all types including Cape Coral Rescue Fire Truck, Lee County Emergency Medical Ambulance, Cape Coral Police BMW Motorcycles, and the Florida Forestry Swamp Buggy, and more awesome vehicles – all in one place.
Read moreMaking Mittens for Fragile X
The hardest part about making the mittens is finding wool sweaters. It takes Carol 2 – 2 ½ hours to complete a pair of wool mittens, which have a soft fleece lining. Mitten sales have done very well over the years, enabling Carol to support Fragile X research.
Read moreClimbing 3 Mountains for Fragile X Research
People often say they would do anything for their children. What if that “anything” was to climb a mountain? How about three in a twenty-four hour time period? That’s exactly what Michael Leonard did in honor of his son, Cole, who lives with Fragile X syndrome.
Read moreFRAXA’s Most Successful End-Of-Year Campaign Ever!
FRAXA Research Foundation relies on the generosity of others to make our shared dream a reality. Our 2021 annual appeal was FRAXA’s most successful end-of-year campaign EVER! Together we will find effective treatments and ultimately a cure for Fragile X syndrome.
Read moreFundraising Never Tasted So Good
I scream, you scream, we all scream for ice cream! That’s what over 100 people said on Sunday, September 26 when the Lancaster Sweet Shoppe in Lancaster, Pennsylvania donated all of its proceeds from the day to FRAXA Research Foundation, in honor of my son, JT. All said and done, we are investing $15,205.30 in FRAXA’s work.
Read moreFragile X Syndrome and Air Travel
If you wish to participate in a letter writing campaign you can copy the letter below and start sending it the CEOs listed at the bottom of the page.
Read moreWieber Family Journey
When Zach and Leslie Wieber started their family, they were unaware of Fragile X syndrome. Then in 2012, they received the news that changed their lives. Their sons, now ages 13, 11, and almost 10, all live with Fragile X syndrome. Like many parents, the Wiebers felt relief and fear when their children were diagnosed.
Read moreUSA Today, “Fragile X treatment: Decades later, progress in rare genetic condition”
In recent weeks, USA Today spent days with FRAXA co-founders Dr. Mike Tranfaglia and Katie Clapp, and their son Andy. Andy lives with Fragile X syndrome and is the focus of a segment of USA Today’s occasional series that explores how scientific advances are transforming care for rare diseases.
Read moreMemorial Tribute to Dr. Stephen T. Warren
Dr. Stephen T. Warren passed away on June 6, 2021. In 1991, Dr. Warren discovered the genetic mutation which causes Fragile X Syndrome and named it FRAXA. Donations can be made in his honor to FRAXA Research Foundation.
Read moreWe Started Out Small, Now Look…
FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!
Read moreNPR Feature – A Fragile X Treatment May Be On The Horizon
With a promising new treatment on the horizon, NPR reflects back at the past 10 years, providing a glimpse into both the science and research of Fragile X through the eyes of key researchers, in addition to the lives of this family, their quest for a cure, and what that may look like for their son, Andy.
Read moreHolly Roos Joins the FRAXA Team!
FRAXA Research Foundation is excited that long time Fragile X advocate and well-known figure within the Fragile X community, Holly Roos, is joining our team as Community Services Director. We are thrilled with the energy and enthusiasm Holly brings to the team.
Read moreCOVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently received emergency approval from the US and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies.
Read moreStarting 2021 Filled with Gratitude and Determination!
2020 was a year we will never forget. Because of this incredible community and dedicated supporters, we were able to pull through the most difficult year most of us have experienced.
Read moreSincere Gratitude for a Successful #GivingTuesday 2020
From the bottom of our hearts, thank you. In a year filled with so much uncertainty, you truly rose to the occasion. From creating Facebook fundraisers to sharing why you give back, each one of you made a difference. With the help of our dedicated supporters and gifts from over 150 amazing donors, FRAXA Research Foundation raised $70,047 on #GivingTuesday.
Read moreA Tribute to Doris Buffett, Philanthropist
We are sad to report that Doris Buffett passed away at the grand age of 92. Doris Buffett donated more than $100 million in her own money to help people who need it. Sister of billionaire Warren Buffett, Doris called FRAXA “The Gold Standard” in grass roots charities.
Read moreFragile X Community Launches #TealTakeover
From a few Zoom Virtual Gatherings an idea was born to do something really special during July to commemorate Fragile X Awareness Day. We would harness the power of the internet to raise awareness with three unique events – the #TealTakeover.
Read moreTalking Step Up for Fragile X
A huge thank you to Talk Fragile X for having FRAXA’s program coordinator Ellen Skala as a guest on your podcast! She got to talk about FRAXA’s upcoming virtual event, Step Up for Fragile X!
Read moreLandmarks Light Up Fragile X Awareness Day 2020
This year, on Fragile X Awareness Day, a growing number of buildings, bridges, and monuments — including Niagara Falls — will be illuminated in teal to spread the word about Fragile X and celebrate our community. Although we may not be able to gather in groups this year, we still encourage you to briefly visit or drive by lighting displays and share your experience with us.
Read moreTalk Fragile X Podcast with Dave Bjork
Thank you Talk Fragile X for hosting FRAXA Research Foundation’s very own Dave Bjork as a special guest on your podcast! We greatly appreciate the opportunity to share who we are and what we are doing to advance Fragile X research.
Read moreWe’re All In This Together, One Day At A Time.
As many of you know, FRAXA’s mission is to find effective treatment options and ultimately a cure for Fragile X. Right now though, we know that we have to pivot. The Fragile X community has always been the center of our mission and today, there are other ways we can be helpful. We would like to host virtual gatherings that will benefit the Fragile X community and help us all feel connected.
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