Volunteer for FRAXA at the Boston Bruins Game

Join us on Friday, November 24 to help raise funds for fragile X research by volunteering when the Boston Bruins host the Pittsburgh Penguins.
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$75,000 Raised for Fragile X Research by Friends of FRAXA at our Fall Fling

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Fragile X Clinical Trial on Novartis’s AFQ056 Opens Enrollment

Elizabeth M. Berry-Kravis, MD, PhD has informed us that Rush University Medical Center in Chicago is enrolling the first patient in the NeuroNext learning trial for children ages 3-6 this week. This is the start of a large-scale fragile X clinical trial of Novartis AFQ056 (an mGluR5 antagonist) with children.
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Neural Markers of Fragile X: A Powerful New Tool for Clinical Trials

Once the neural marker is identified for a particular challenge, such as kids with poor language versus good language, neural markers can be measured during drug and behavioral therapy trials to see if a child is improving based on objective biological measures.
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Fragile X Research Grants 2017 Recipients

Our lastest Fragile X Research Grants 2017 Recipient is the team of Probal Banerjee, PhD, Alexandra Marsillo, and Tatyana Budylin from College of Staten Island with thier reseach project: Correcting Fragile X-associated Deficits by Targeting Neonatal PKCepsilon Signaling in the Brain.
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Fragile X Awareness Day Origins and a Tribute

July 22 is National Fragile X Awareness Day, but I’ll bet few know the history behind it. In 2000, before there was such a thing as a Fragile X Advocacy Day, FRAXA Research Foundation and David Busby (husband to Mary Beth, father to two adult sons living with fragile X, a member of FRAXA’s pioneering leadership team, and a prominent and politically well-connected DC lawyer) were running fragile X advocacy in Washington, DC.
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Drug Repurposing Accelerates Progress Towards Fragile X Treatments

While there are over 8,000 rare diseases affecting an estimated 350 million people worldwide, only around 200 of these conditions have effective treatments. Due to the high cost of developing new drugs, rare diseases have historically been less attractive to pharmaceutical companies. Drug repurposing systematically leverages the detailed information available on approved drugs and reduces the time and money needed to deliver safe “new” treatments, but with greater success rates and a potentially more immediate impact on health care.
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FRAXA Wins Award for Drug Repurposing

Cures Within Reach, the leading global nonprofit focused on repurposing research as a fast track to saving patient lives, has awarded FRAXA Research Foundation the 2017 Golan Christie Taglia Patient Impact Philanthropy Award for efforts to find treatments for the rare disease fragile X syndrome.
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Metformin, Diabetes Drug, Potential Fragile X Treatment

"We treated mice with metformin and corrected all the core fragile X deficits. We are optimistic about using metformin in human clinical trials. This is a generic drug with few side effects" says Nahum Sonenberg, PhD, James McGill Professor, Department of Biochemistry, McGill Cancer Center, McGill University.
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Funding Opportunities for Fragile X Research 2017-18

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Genes and Gems Fundraiser raises $40,000 for Fragile X Research

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TD Bank invites friends of FRAXA to watch the Bruins

Fifty friends of FRAXA enjoyed an amazing night at the TD Garden in Boston on March 30. They gathered to watch the Boston Bruins take on the Dallas Stars. It was a great opportunity for us to unite the greater Boston fragile X community. We were able to convene and thank some of our local families and introduce them to university and biotech scientists who are working to find a cure for fragile X. The night was made available by a generous donation of the Garden View Room by TD Bank.
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