About FRAXA Research Foundation

FRAXA Accelerates Progress toward a Cure

Our Mission

To find effective treatments and ultimately a cure for Fragile X syndrome.

We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between research discoveries and actual treatments.

Treatments for Fragile X are likely to help people affected by autism, Alzheimer’s, and other brain disorders.

mark bear

It’s hard to overestimate the impact of FRAXA in advancing Fragile X research toward treatments. From the get-go they were unwilling to accept defeat.

Mark Bear, PhD

Massachusetts Institute of Technology
Michael_Snape

Now there is an industry-wide pipeline of programs in development across many companies. It is a simple truth that without FRAXA, this would not be the case. The initiatives FRAXA has in place have been, and continue to be, crucial to this critical mass of effort to find new options for people with lives touched by Fragile X.

Michael Snape, PhD

AMO Pharma, Ltd

FRAXA Research Foundation in the News

USA 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.

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NPR Short Wave, “A Fragile X Treatment May Be On The Horizon”

Katie Clapp and Michael Tranfaglia’s son was born with a genetic disorder that affects brain development. It makes it hard to learn language and basic daily tasks and often is accompanied by a host of other disorders. To help find a cure, they started a foundation and raised research money. After se…

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The New York Times, “Medical Charities Once Advised on Coping With a Disease. Now They Try to Cure It”

Propelled by genome sequencing and social media, thousands of charities have sprung up to finance, coordinate and oversee research for cures. Katie Clapp and her son, Andy, who has Fragile X, a disease that causes intellectual disability, with a therapy horse at Gateway Farm in Merrimac, Mass. Ms. Clapp helped form a group that has spent millions on research for a cure.

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Give with Confidence

An investment in FRAXA is an investment in the future of those living with Fragile X. Become a partner in our life-changing work by donating to FRAXA today.

FRAXA recognizes the responsibility that comes with your contribution and is proud to be continually recognized as one of the most reliable stewards of donor gifts. We earn the highest marks possible from major nonprofit rating agencies.

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Research Funding Per Year

FRAXA’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. We directly fund research grants and fellowships at top universities around the world and prioritize the funding of Fragile X clinical trials. While the COVID pandemic closed labs and slowed progress during 2020, we are back on track.

Charity Navigator is the largest charity evaluator in America. Its website helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of an organization. Their ratings show donors how efficiently a charity will use their support, how well it has sustained its programs and services over time, and their level of commitment to accountability and transparency. FRAXA Research Foundation is ranked a four-star charity by Charity Navigator.

GreatNonProfits is the leading platform for community-sourced stories about nonprofits. Through the collection of donor, community and volunteer stories, GreatNonProfits inspires giving by amplifying the voices of loyal supporters. FRAXA is proud to be a Top-Rated nonprofit by GreatNonProfits.

Candid, formerly Guidestar, utilizes factual information from a nonprofit’s financial statements, board governance model and communication strategy to assess their level of transparency. They partner with industry leaders to help donors make decisions with confidence. FRAXA earned Platinum Seal of Transparency, the highest possible, from Candid.

Sara Hamilton

Parent, Missouri

FRAXA lives and breathes its mission to help the Fragile X community through funding cutting-edge research. I know when I support and donate to FRAXA, they will be excellent stewards of my contributions. The research they are funding will ensure a bright future for my son.

Olivia Eddy

Parent, New York

FRAXA Research Foundation has provided a lifetime of support to my family and others through its uncompromising dedication to finding treatments and a cure for Fragile X syndrome. I feel fortunate to have grown so close to cofounders Katie and Mike, who have worked tirelessly to drive FRAXA's valiant efforts since its inception in 1994. It has been an honor to have witnessed first-hand the direct impact FRAXA's progress has made on my family and countless others affected by Fragile X.

Ken Steinberg

Family Friend, Massachusetts

One of our company founders has a grandchild who has Fragile X. As a result we have engaged the company to support FRAXA's efforts and have found them to be a wealth of information. We have had numerous interactions with the founders and have experienced a high level of commitment and integrity.

April Godwin

Parent, Alabama

FRAXA Research Foundation has been a light for us. I have a son with full mutation Fragile X, and FRAXA's nonprofit not only works hard to fund finding a cure, they also connect families through social media posts, raise awareness, and make families like mine feel not so alone in this fight. They are amazing!

Jennifer Frobish

Parent, Missouri

FRAXA has given our family so much hope. We've reached out to their leadership for advice about medications and research trials. We are enrolling our teenage son in one and really excited about its potential. FRAXA helped designed this trial and funded its early phases. If they hadn't built relationships and expertise like they have, we wouldn't have access to groundbreaking studies like this. We are so excited.