News & Updates

Built Jobsite BBQ Raising Funds for Fragile X Research

FRAXA Research Foundation Events Recap May 5, 2022May 9, 2022

Jason, a Built employee, worked with his team to host a BBQ at one of their construction sites to benefit FRAXA Research Foundation. Built, one of Australia’s largest private construction groups, has a reputation for being client focused. Their personal touch extends not only to their clients but to their employees, too, as Jason and Belinda D’Amico experienced personally after their boys, Jaxson and Alex, were diagnosed with Fragile X syndrome.

Repurposing FDA-Approved Drugs to Treat Major Depressive Disorder in Fragile X Syndrome

Did you know that depression is more common in those with autism and/or Fragile X? Even more disturbing is the discovery that current treatments for depression do not work in Fragile X mice. With this grant, the team will work to develop a rapid screening tool to identify FDA-approved drugs which can treat depression in people with Fragile X syndrome.

FMR1 Renamed to Fragile X Messenger Ribonucleoprotein 1

FRAXA Research Foundation Community April 13, 2022May 20, 2022NIH

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.

VLM Commodities Charity Week Raises $10,000 for Fragile X Research

FRAXA Research Foundation Events Recap April 8, 2022autism

“We are often asked how we can do this, live with the challenges of Fragile X, day in and day out” Lou shared, “It’s just what we do. We keep going forward. FRAXA gives life and purpose to our community. I look forward to Charity Week being an annual VLM event and supporting the work FRAXA does.”

How FRAXA Prioritizes Research, Explained

FRAXA Research Foundation FRAXA Explained • Research Updates April 7, 2022drug repurposing, mRNAs

Dr. Mike Tranfaglia explains how FRAXA prioritizes research and the importance of looking at research from multiple angles. “It’s not either-or. It’s not we have a definitive treatment or we have a new drug treatment or we have a repurposing treatment. We can have all of those things, mixed or matched, in a personalized medicine kind of way and I think that’s what we’re headed for.”

Aggression, Other Fragile X Behaviors Tend to Ease Over Teenage Years

Fragile X News Today Research Updates April 5, 2022April 5, 2022autism

Behavioral problems such as hyperactivity and aggression are generally more frequent in younger children with Fragile X syndrome, becoming less common as they grow through adolescence and journey toward adulthood, researchers report.

Cape Coral Touch-A-Truck, Free, Family-Friendly Event

FRAXA Research Foundation Community March 31, 2022April 5, 2022sound

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.

Wine and Friends Are a Great Blend for Fragile X Research

FRAXA Research Foundation Events Recap March 25, 2022

This evening was the first of what will be an annual event for Debra and Kevin, whose grandson Jackson has Fragile X syndrome. Their son, Edward, was on hand sharing with guests how Fragile X has impacted the life of his son and the challenges he and his wife, Avalon, face each day.

What FRAXA Is Excited about in the Upcoming Fragile X Research Grants, Explained

FRAXA Research Foundation FRAXA Explained • Research Updates March 24, 2022drug repurposing, mRNAs

Dr. Mike Tranfaglia shares what FRAXA is excited about as we work through reviewing all of the submitted Fragile X research grant applications. We find it especially exciting that so many new clinical trials are starting right now, as our major emphasis is getting the drugs and other treatment strategies that we have tested in the Fragile X mouse model to patients in clinical trials.

Gordon Research Conference for Fragile X and Autism-Related Disorders, Explained

FRAXA Research Foundation FRAXA Explained • Research Updates March 17, 2022March 23, 2022autism, Fragile X Meeting

The Fragile X and Autism-Related Disorders Gordon Research Conference is a biannual event that provides an international forum for the presentation and discussion of frontier research in these conditions. Dr. Mike Tranfaglia explains why this is the premier conference for researchers and the scientific community.

Recruiting: BRIDGE Study (BRain Indicators of Developmental Growth)

FRAXA Research Foundation Recruiting • Wilkinson, Carol March 7, 2022March 8, 2022autism, EEG, sound

This study from the Wilkinson Lab at Boston Children’s Hospital is investigating how differences in brain activity affect learning, language and behavior in children with Fragile X syndrome, Down syndrome, and Autism Spectrum Disorder. One of the goals is to find brain markers that predict cognitive, language, and behavioral difficulties in these groups. Another goal is to better understand the differences in brain activity between young children with and without Fragile X and Down Syndrome, and whether these differences are similar in children with Autism Spectrum Disorder.

Recruiting: Clinical Study of Non-Invasive EEG for Children Ages 2-7

FRAXA Research Foundation 2017 Grants • 2018 Grants • 2019 Grants • 2020 Grants • 2021 Grants • 2022 Grants • Biomarkers • Boston Children's Hospital • Clinical • Current Research Grants • Has Results • Nelson, Charles A. • Recruiting • Research Updates • Trials and Studies • Wilkinson, Carol March 5, 2022April 11, 2022autism, EEG, NIH, Pierce Family Fragile X Foundation, sound

Dr. Carol Wilkinson, MD PhD, and Dr. Charles Nelson, PhD, at Boston Children’s Hospital are recruiting children ages 2-7 years with Fragile X syndrome to participate in a study of brain differences using non-invasive EEG.

Making Mittens for Fragile X

FRAXA Research Foundation Community February 25, 2022

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.

Meet Archie!

FRAXA Research Foundation #FriendofFRAXA February 18, 2022cancer

Meet #FriendofFRAXA Archie! If you would like to nominate someone as a #FriendofFRAXA, we welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike to become a #FriendofFRAXA with the goal of putting a face to Fragile X for those who may not know someone directly.

Correcting Fragile X Syndrome Deficits by Targeting Neonatal PKCε Signaling in the Brain

FRAXA Research Foundation 2017 Grants • 2018 Grants • Banerjee, Probal • Budylin, Tatyana • College of Staten Island • Completed Research Grants • Disease Mechanisms • Marsillo, Alexandra • Research Grant Results • Research Updates • Treatment Targets February 17, 2022April 11, 2022AMPA, AMPAkines, NIH

With this $90,000 grant from 2017-2018, Dr. Banerjee’s team has shown that enhancing PKCε can correct brain development and abnormal behaviors in Fragile X knockout mice and had their findings published in PubMed.

Climbing 3 Mountains for Fragile X Research

FRAXA Research Foundation Community • Events Recap February 4, 2022February 14, 2022sleep

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.

Potential Upcoming Advances in Fragile X Research

FRAXA Research Foundation Kind, Peter • Research Updates • Sonenberg, Nahum February 3, 2022

Dr. Peter Kind, Director of the Patrick Wild Centre and Professor of Developmental Neuroscience at the University of Edinburgh, and Dr. Nahum Sonenberg, James McGill professor of biochemistry at McGill University, share their optimism about the next 10 years of Fragile X research. They discuss where they think the next big discoveries will emerge.

Lovamix: Clinical Trial of Combined Treatment of Minocycline and Lovastatin in Fragile X Syndrome

FRAXA Research Foundation 2012 Grants • 2015 Grants • 2016 Grants • 2017 Grants • Biomarkers • Clinical • Corbin, Francois • Has Results • Lepage, Jean-Francois • Research Grant Results • Trials and Studies • University of Sherbrooke, Canada February 3, 2022April 18, 2022Fragile X Meeting, lovastatin, minocycline, MRI, Roche

With a $66,714 grant from the FRAXA Research Foundation awarded over 2015-2017, Dr. Francois Corbin at the Universite of Sherbrooke will test the safety and synergistic effects of lovastatin and minocycline in patients with Fragile X syndrome.

FRAXA’s Most Successful End-Of-Year Campaign Ever!

FRAXA Research Foundation Community January 11, 2022

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.

Neurodevelopmental Drug Development Summit Presentation

FRAXA Research Foundation Research Updates January 7, 2022Autifony Therapeutics, Prader-Willi

FRAXA president and co-founder, Katie Clapp was one of three patient advocacy leaders invited to kick off the Neurodevelopmental Drug Development Summit with a presentation on Fragile X, and FRAXA Scientific Advisor, Dr. Elizabeth Berry-Kravis also presented lessons learned from clinical trials in Fragile X Syndrome.

Reactivating the Fragile X Gene in Young Mice Reverses Symptoms

Holly Roos Ethell, Iryna • Nelson, David • Razak, Khaleel • Research Updates December 28, 2021January 11, 2022autism, CRISPR, sound

A new FRAXA-funded research project offers hope that Fragile X syndrome could be treated by reactivating the gene which is shut down in people with the syndrome. Researchers at the University of California, Riverside report that they were able to reduce FXS symptoms by inserting the FMR1 gene into the brains of very young mice.

Meet Jonathan!

FRAXA Research Foundation #FriendofFRAXA December 26, 2021February 18, 2022

Meet #FriendofFRAXA Jonathan! If you would like to nominate someone as a #FriendofFRAXA, we welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike to become a #FriendofFRAXA with the goal of putting a face to Fragile X for those who may not know someone directly.

10 Year Vision for Collaborations That Transform Fragile X and Autism Research

FRAXA Research Foundation Research Updates December 20, 2021December 20, 2021autism

The future offers hope for people living with Fragile X syndrome. Collaborations between the Fragile X community and other disability organizations help to provide understanding and advancement of research to bring effective treatments to families. FRAXA’s Dr. Mike Tranfaglia talks with Autism Science Foundation’s Allison Singer about the importance of their collaboration as we look forward to the next 10 years.

Patrick’s PALS Still Shined Strong Even in the Face of COVID

James & Pamela Vershbow Events Recap December 13, 2021Patrick's PALS

Patrick’s PALS 25th Annual 3-on-3 Basketball Tournament & Fundraiser was once again relegated to “Fundraiser Only” status in 2021. BUT, and it’s a BIG but, the spirit, generosity and devotion of so many to this event still shined through. Over $140,000 was raised through a mail campaign, all of it of course going to FRAXA to continue to advance research that will someday lead to effective treatments and ultimately a cure.

$100,000 Donor Matching Challenge From The Robert & Ardis James Foundation

FRAXA Research Foundation Community December 7, 2021December 7, 2021autism

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.

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