The Westmark laboratory continues to study sleep and rest-activity cycles in Fragile X mice as a potential outcome measure that correlates between preclinical and clinical research. The analysis of sleep EEG in the mice has proven more labor intensive than they anticipated, but the team is collaborating with Dr. Rama Maganti’s laboratory at UW-Madison on the development of computer scrips to speed up the analysis.
Read moreAuthor: FRAXA Research Foundation
Meet Jackson!
Meet #FriendofFRAXA Jackson! 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.
Read moreDrug Repurposing for Rare Disease and the Future of Health – The Genetics Podcast
In this double-bill episode of The Genetics Podcast, Dr. Patrick Short talks to two key rare disease researchers in the field: Dr. Bruce Bloom, CCO of Healx, and Dr. Mike Tranfaglia, CSO of FRAXA. Both draw on their wide-ranging personal and professional experiences to discuss the successes and opportunities of drug repurposing, the power of using machine learning, and the work they’ve been doing to aid in finding effective treatments for Fragile X.
Read morefNIRS to Measure Treatment Response in Young Children with Fragile X
FRAXA Research Foundation has awarded a $90,000 research grant to Dr. Craig Erickson and Dr. Elizabeth Smith at Cincinnati Children’s Hospital to test functional near-infrared spectroscopy (fNIRS), in children who have Fragile X syndrome. fNIRS is safe, non-invasive, and easily-tolerated. It uses light sources and sensors on the scalp to build a heat map of the brain in action.
Read moreResults Reported: Using EEG Responses to Sound for Fragile X Drug Discovery
Jonathan Lovelace, a FRAXA funded Postdoc at UC Riverside, has made some exciting EEG findings over the past few years studying auditory hypersensitivity in mice and therapeutic drug treatments. A big obstacle in FXS research has been establishing reliable, unbiased, and translation relevant biomarkers that can be used to determine the effectiveness of therapies. One of the most important discoveries they have made is the striking similarity in EEG biomarkers between mice and humans.
Read moreShould You Participate in a Fragile X Clinical Trial?
A Fragile X clinical trial of a new PDE4D allosteric inhibitor from Tetra Therapeutics is nearly complete. Right now there are 3 remaining spots open to males 18-45 years of age with Fragile X syndrome. Dr. Elizabeth Berry-Kravis at the Rush University Medical Center in Chicago is leading this trial. The drug being studied has a unique mechanism of action that might improve cognitive and memory function.
Read moreMeet Will!
Meet #FriendofFRAXA Will! 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.
Read moreThankful is an Understatement
To say we are thankful would be an understatement. Before 2019 came to a close, FRAXA Research Foundation set an ambitious goal of $750,000 to raise by the start of the New Year. We knew that it would require all hands on deck, and we knew that those of you who believe in our mission would rise to the occasion. The turnout we received was beyond what we could have hoped for.
Read moreBoston Bruins Fans and Volunteers raise $18,500 for Fragile X Research
For the 5th year in row, the Bruins Foundation chose FRAXA as a beneficiary of their 50/50 raffle to benefit a lucky charity. This year’s game was held on November 23, 2019 against the Minnesota Wild. Not only were the Bruins able to take home a win, but FRAXA received half of a whopping $37,000 raised that night!
Read moreMeet Caleb!
Meet #FriendofFRAXA Caleb! 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.
Read moreJim Cantore Assists on an Absolutely Successful #GivingTuesday
With the help of our resilient supporters and the gifts of over 130 amazing donors, FRAXA Research Foundation raised $50,500 on #GivingTuesday. With a matching gift of $45,000 we were able to raise a total $95,500 to advance Fragile X research, funding two year-long research grants!
Read moreMeet Jed & Kit!
Meet #FriendofFRAXA Jed & Kit! 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.
Read moreGenes & Gems Raises $56,000 for Fragile X Research!
On November 16, 2019, our amazing Ohio families held an unforgettable Genes & Gems event to support FRAXA Research Foundation. This year, at the Renaissance Columbus Hotel, families and friends gathered to support Fragile X research. The evening included presentation Dr. Craig Erickson from Cincinnati Children’s Hospital.
Read moreMeet Jack!
Meet #FriendofFRAXA Jack! 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.
Read moreMeet Anthony!
Meet #FriendofFRAXA Anthony! 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.
Read moreMeet Jagger!
Meet #FriendofFRAXA Jagger! 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.
Read moreTargeting Adiponectin to Treat Fragile X Syndrome
FRAXA Research Foundation has awarded a $30,000 research grant to principal investigator Brian Christie, PhD, and postdoctoral fellows Jonathan Thacker, PhD, and Luis Bettio, PhD, at the University of Victoria. They are investigating whether boosting the hormone adiponectin can effectively treat Fragile X syndrome. This project is funded in partnership with the Fragile X Research Foundation of Canada, which is providing an additional $15,000.
Read moreMeet Matty & Jackson!
Meet #FriendofFRAXA Matty & Jackson! 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.
Read moreHealx Raises $56M to use AI to Find Treatments for Fragile X & Other Rare Diseases
Healx has secured $56M in new financing to build a clinical-stage portfolio for rare diseases, including treatments for Fragile X syndrome, and to launch a global Rare Treatment Accelerator program. Where the traditional drug discovery model takes more than a decade and can run into the billions of dollars, Healx’s AI-driven approach makes the process faster, more efficient and cost-effective.
Read moreMeet Alfie!
Meet #FriendofFRAXA Alfie! 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.
Read moreFRAXA Welcomes Elle to the Team!
Ellen Skala, known as Elle, has joined FRAXA Research Foundation as Program Coordinator. Elle is excited to work on the FRAXA team and we are excited to have her on board! She has experience in grant writing and personal fundraising campaigns. In her new role as program coordinator, Elle will communicate with FRAXA supporters throughout the country, connecting them to the mission and assisting them in fundraising and awareness-raising activities.
Read moreDeep Molecular Profiling of Fragile X Mouse and Human Cells
FRAXA Research Foundation has awarded $90,000 to Dr. Joel Richter, Principal Investigator, and Dr. Sneha Shah, Postdoctoral Fellow, at the University of Massachusetts Medical School. They are using human induced pluripotent stem (iPS) cells to analyze gene expression in Fragile X syndrome.
Read moreTargeting Mitochondria in Human Fragile X Syndrome Neurons
FRAXA Research Foundation has awarded a $90,000 research grant to principal investigator Dr. Xinyu Zhao and postdoctoral fellow Dr. Minjie Shen at the University of Wisconsin. They are investigating whether drugs which boost mitochondria — which provide the energy for cells — could treat Fragile X syndrome. Dr. Zhao explains in this video.
Read moreNH Fragile X Awareness Day Proclaimed at July Jam Fundraiser
On July 22, 2019, the Fragile X July Jam in Derry, NH, raised over $6000 for FRAXA Research Foundation, to fund research to find effective treatments and ultimately a cure for Fragile X syndrome. Governor Chris Sununu’s policy director D.J. Bettencourt read an official proclamation calling for awareness of, and research on, Fragile X.
Read more20 Landmarks Will Light Up for Fragile X Awareness Day
Newburyport, MA (July 15, 2019) — Today, FRAXA Research Foundation announces that 20 buildings, bridges and landmarks across the United States and Canada will be illuminated teal on Monday, July 22, to celebrate International Fragile X Awareness Day. The goal of the initiative is to raise awareness of Fragile X syndrome, the most common inherited cause of autism and learning disabilities worldwide.
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