FRAXA background

31
DEC
2015
Allison Eddy

Please make a donation to FRAXA Research Foundation

Support Fragile X Syndrome Research Dripping water hollows out stone, not through force but...
07
DEC
2015
neuren fragile X trial result graph

Neuren’s trofinetide successful in Phase 2 clinical trial in Fragile X

We are pleased to share great news adapted from Neuren’s press release: Neuren’s...
03
DEC
2015
Cote family

Crafts for a Cure for Fragile X Syndrome

Handmade Magic In a far away land, the family and friends of eleven-year-old Makenzie Cote are...
26
NOV
2015

Fragile X Research Thanksgiving Update

As we near the end of 2015, we wish you and your family all the best in this holiday season. We...
23
NOV
2015

Boston Bruins Raffle for Fragile X Research

At each home game, the Boston Bruins Foundation hosts a 50/50 raffle with half the proceeds...
05
OCT
2015
CRISPR

CRISPR – Does it hold promise for Treatment of Fragile X Syndrome?

There’s been a lot of press concerning a new biotechnology called CRISPR/Cas9, or simply...
21
SEP
2015
bk channels - fragile X treatment target

FRAXADev – Developing BK Channel Openers for Fragile X Syndrome

A number of people have asked us about FRAXADev, a new project starting in France; this is a...
17
SEP
2015
chile-lab-FRAXDVI

FRAXA Newsletter – International Fragile X Research, Parent Resources, and Mission to Lars

International Initiatives – Fragile X Research in South America ​FRAXA funds a highly...
20
JUL
2015
Claudia Bagni, PhD, at University of Rome, FRAXA research grant

At a crossroads of Fragile X and Alzheimers Research

Researchers investigate treatment targets which may address both Fragile X Syndrome and...
16
JUL
2015

Survey for Parents of Children with Fragile X Syndrome

Researchers at the University of South Carolina are looking for parents who have at least one...
24
JUN
2015
Alcobra logo

Fragile X Clinical Trial Results of metadoxine by Alcobra

Metadoxine for Fragile X – a glimmer of hope Alcobra just announced results from their...
03
JUN
2015
Patrick's Pals raised funds for Fragile X

Patrick’s Pals raise $160,000 for Fragile X

19th Annual Basketball tournament to raise funds for Fragile X research Patrick’s PALS...
02
JUN
2015
Michael Tranfaglia, FRAXA Medical Director

Fragile X: Past, Present, Future – Video

Fragile X Presentation by Michael Tranfaglia, MD, FRAXA Medical Director IDD-C conference...
28
MAY
2015
Bruins $90,000 donation to FRAXA for Fragile X research grant

Boston Bruins Grant Funds New Fragile X Research

Boston Bruins Foundation’s $90,000 commitment to FRAXA Bruins Foundation Executive Director Bob...
08
APR
2015
Qionger He, PhD, and Anis Contractor, PhD

FRAXA Funds 2015 Fragile X Research Projects

New 2015 Fragile X research projects have launched!  FRAXA’s mission reaches beyond funding...
12
MAR
2015

Fragile X Treatment: New Research Directions

Re-examining the Nature of Fragile X by Michael Tranfaglia, MD FRAXA Medical Director In the...
11
MAR
2015
bugula

Bryostatin Restores Learning and Memory in Adult Fragile X Mice

Just as the Amazon rainforest may hold a cure for cancer if only scientists can find it, a...
11
MAR
2015
neuren video

Neuren Fragile X Study of trofinetide (NNZ-2566) – New sites and video

Three new sites recently joined Neuren Pharmaceuticals’ clinical trial of trofinetide...
11
MAR
2015
Fragile X Team UMass

Fragile X Programs at UMASS – University of MA, Worcester

Fragile X Programs aimed at improving the lives of individuals with Fragile X Syndrome at UMASS...
20
FEB
2015
Simon is weird and wonderful. He's friendly and curious and talks non-stop. He's an athlete and an artist. He's unbelievably generous and crazy stubborn. He often repeats sentences. When his mom reprimands him for something, he'll say,

Fragile X Portraits: Simon

Simon is weird and wonderful. He’s friendly and curious and talks non-stop. He’s an...
19
FEB
2015
FRAXA investigator Sumantra Chattarji and India Prime Minister Shri Narendra Modi

India Prime Minister Narendra Modi visits FRAXA investigator Dr. Sumantra Chattarji

India’s Prime Minister Narendra Modi visited FRAXA investigator, Dr. Sumantra Chattarji,...
23
JAN
2015
Fragile X discovery

Rare case uncovers missing clue to Fragile X

Here is another clue to the Fragile X Syndrome mystery, discovered by Dr. Vitaly Klyachko...
13
JAN
2015

Mark Bear shows mGluR5 blockers correct problems in autism model

FRAXA Scientific Advisor and researcher Mark Bear, author of the mGluR Theory of Fragile X, has...
22
DEC
2014

Family’s Search For Fragile X Drug Finds Frustration, Hope

on NPR Morning Edition by Jon Hamilton Read or listen here:...
22
DEC
2014
Fragile X Student teams at WPI help FRAXA Research Foundation

Students at WPI helping FRAXA Research Foundation

Undergraduate students at Worcester Polytechnic Institute (WPI) complete what is known as the...
26
NOV
2014
Fragile X compound from Neuren

Neuren’s NNZ-2566 shows clinical benefit in Rett syndrome trial

Promising results in Phase 2 clinical trial by Michael Tranfaglia, MD FRAXA Medical Director...
18
NOV
2014
synapse Fragile X

FRAXA Grants and Fellowships for Fragile X Research – 2015 Priorities

Funding Priorities for Feb 2, 2015 FRAXA Grant Cycle While FRAXA Research Foundation’s research...
21
OCT
2014
Alex Kolevzon, MD, Clinical Director, Seaver Autism Center Mount Sinai School of Medicine

Informational Clinical Trial Webinar: NNZ-2566

On October 15, 2014, FRAXA hosted an Informational Webinar about the Phase II Clinical Tria...
23
SEP
2014
Kimberly Huber, Ph.D., FRAXA Investigator

NIH awards $35 Million to three Fragile X research teams

The National Institutes of Health has just announced new awards of $35 million over five years...
15
SEP
2014
Fragile X Syndrome Family History Study

Join Survey Study for Families with Fragile X

    Attention Fragile X parents: here’s an easy survey study you can join. No...
10
SEP
2014
Roche Fragile X program

Roche reports clinical trial negative results

Roche has shared the sad news that their clinical trials in Fragile X have been unsuccessful....
04
SEP
2014
FRAXA 2013 spending on programs (Research and Education) was 93%, with just 7% spent on overhead (Fundraising and Management).

FRAXA Update Sept. 2014

New Clinical Trials Open for Participants We are delighted to see more Fragile X treatment...
15
AUG
2014
Mike Tranfaglia, MD, FRAXA Chief Scientific Officer

Fragile X Clinical Trials: is the mGluR Theory still valid?

POSTED BY MICHAEL TRANFAGLIA MD Why have clinical trials failed?  Tolerance and Dose Range In...
06
AUG
2014

Fragile X Clinical Trials: Was Tolerance the Problem?

Further thoughts on our AFQ056 experience POSTED BY MICHAEL TRANFAGLIA MD The recent Fragile X...
24
JUL
2014
Iryna Ethell UC Riverside, FRAXA researcher

Fragile X Syndrome Treatment Target: MMP-9

A major article from the Ethell lab at UC Riverside has shown the therapeutic potential of...
26
JUN
2014
Dr. Mike Tranfaglia with son, Andy

Fragile X Clinical Trial: Novartis trial results are in, and they’re not pretty

AFQ056 Fragile X Clinical Trial showed Negative Results This year’s Gordon Conference...
23
MAY
2014
USA Today logo

FRAXA Featured in USA Today: Disappointments aside, optimism for Fragile X drugs

On May 22, 2014, USA Today featured an article surrounding FRAXA’s optimism for...
28
APR
2014
Mike Tranfaglia, MD, FRAXA Chief Scientific Officer

FRAXA Science Update Teleconference: Latest news about Fragile X Clinical Trials

When 10:30 am Eastern Daylight Time on Wednesday April 30, 2014   Topics FRAXA Medical...
24
APR
2014

Novartis Discontinues Development of mavoglurant (AFQ056) for Fragile X Syndrome

Novartis Clinical Trials in Fragile X Ended Novartis has announced that the company will be...
01
APR
2014

Experimental Drug FRAX486 Reverses Schizophrenia In Mice

A new study shows that one of a class of compounds known as PAK inhibitors, appears to have...
26
MAR
2014

New clue to Fragile X and autism found inside brain cells

Researchers led by Dr. Karen O’Malley at Washington University School of Medicine in St....
25
MAR
2014

What Treatments Work for FXTAS?

Many older family members in the fragile X community are affected by FXTAS (Fragile...
11
MAR
2014

Postdoctoral and Graduate Students welcome at Gordon Research Seminar on Fragile X and Autism

The role of the early-career researcher in today’s biological sciences cannot be overstated....
27
FEB
2014

Scientists Uncover Trigger for Fragile X syndrome

Finding May Explain Many Brain Disorders, Lead to Prevention and Treatment adapted from Weill...
19
FEB
2014

New FRAXA Research Grant Applications Are In!

by Michael Tranfaglia, MD It’s that time of year again – February always brings a flood of new...
28
JAN
2014

Scientists at Northwestern University connect GABA with delayed Synaptic Development in Fragile X Syndrome

In 2013, FRAXA funded a postdoctoral fellowship for Dr. Qionger He in the laboratory of Dr....
24
DEC
2013

FRAXA will be a Charity Partner for the 2014 Marine Corps Marathon

FRAXA Team – Marine Corps Marathon – Arlington, VA – October 26, 2014 The MCM...
18
DEC
2013

FDA Grants Orphan Drug Status to Alcobra’s Metadoxine for Fragile X Syndrome

“We are pleased that the FDA has granted Orphan Drug status to Metadoxine, the active...
17
DEC
2013

FDA hosts Public Workshop: “Complex Issues in Developing Drug and Biological Products for Rare Diseases”

The Food and Drug Administration is hosting a workshop is to discuss complex issues in clinical...
13
DEC
2013

Molecular mechanisms: Enzyme blockers help fragile X mice

Nice writeup on SFARI.org – Simons Foundation Autism Research Initiative – about...
27
NOV
2013

NIH Grant Opportunity: Centers for Collaborative Research in Fragile X

This funding opportunity announcement (FOA) invites applications for the Centers for...
22
NOV
2013

FRAXA Grants and Fellowships for Fragile X Research – 2014 Priorities

Funding Priorities for Feb 1, 2014 Grant Cycle We anticipate particularly keen competition for...
08
NOV
2013
Elizabeth Higgins Clark

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

In a heartfelt, humorous and insightful speech, Elizabeth Higgins Clark imparts the inspiration...
31
OCT
2013

How to Donate Stocks (Securities) to FRAXA

People can donate stocks and can realize great tax advantages this way. The details: FRAXA’s...
30
OCT
2013
Joseph Horrigan, MD

Neuren receives FDA orphan drug status for NNZ-2566 in Fragile X

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to NNZ-2566 for...
24
OCT
2013

FRAXA’s 2014 Top Goals

Complete Phase II/III Clinical Trials of mGluR5 Antagonists – and learn results Currently two...
10
OCT
2013
Khaleel_Razak

FRAXA Researcher receives $867,000 Grant from NSF

The National Science Foundation (NSF) has awarded Khaleel Razak nearly $867,000 to continue his...
04
OCT
2013
Alcobra logo

Alcobra Presented Pre-Clinical Fragile X Data at FRAXA Meeting

Alcobra presented new pre-clinical findings showing that metadoxine ameliorated cognitive and...
26
SEP
2013
Richard Jope

New Research Advance: Lithium/GSK3 for Fragile X

Two new papers from FRAXA-funded researcher Dr. Richard Jope demonstrate the potential of GSK3...
25
SEP
2013
Alcobra logo

Alcobra to Present Fragile X Study Results at 2013 FRAXA Investigators Meeting

Alcobra Ltd., an emerging biopharmaceutical company primarily focused on the development and...
18
SEP
2013

Fragile X syndrome protein linked to breast cancer progression

Having Fragile X Syndrome may protect against breast cancer ​Claudia Bagni (VIB/KU Leuven,...
23
AUG
2013

Fragile X » Local News » Valdosta Daily Times

Before support groups, one mother, son found their own community by Dean Poling, The Valdosta...
31
JUL
2013
Taylor happy, with Debbie

Spotlight on two families – experiences on the extension trial of AFQ056

Experiences on the Extension Trial of AFQ056 Alex Kowal and Taylor Stevenson, two young men who...
31
JUL
2013
Sage Therapeutics

NIH grant could be worth up to $10m to SAGE Therapeutics and its Fragile X Syndrome drug

SAGE Therapeutics, a Cambridge, MA, company developing new medicines to treat central nervous...