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.
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Meet 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.
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National Institutes of Health Releases Fragile X Strategic Plan
FRAXA Program Coordinator, Elle Skala, and long time FRAXA supporter and previous Board Member, Mary Beth Busby, traveled to the National Institutes of Health earlier this week. The timing of this meeting was perfect because the National Institutes of Health (NIH) just released their long-anticipated Strategic Plan for Fragile X Syndrome, FXTAS, and FXPOI. It will guide federal Fragile X research funding for at least the next five years and open the door for continued funding of the Fragile X Research Centers of Excellence.
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Meet 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.
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Meet 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.
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A Personal Touch to Supporting Fragile X Research
As we get closer to the holiday season and the end of the year approaches, we start to reflect on what we have accomplished throughout the year. Did we keep our New Year’s Resolution? Did we spend more time with family and friends? We at FRAXA want to remind you that there is no better time than the present to make a difference. Before the year ends, you can have an impact.
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Targeting 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.
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Meet 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.
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Healx 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.
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FRAXA Biotech Games, It Can Only Happen in an Open Community
The FRAXA Biotech Games exploded onto Cambridge Crossing with a capacity crowd. What was immediately obvious was the genuine camaraderie and mutual support of the biotech community and its many vendors to help raise awareness of and funds for research on Fragile X, the most common inherited cause of autism and intellectual disabilities.
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Meet 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.
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FRAXA 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.
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Deep 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.
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22 Landmarks Lit up Teal for Fragile X Awareness Day
Last year, Niagara Falls was the one and only landmark lit up teal for Fragile X Awareness Day. This year, it was 1 of more than 20! On July 22, to mark Fragile X Awareness Day, buildings, bridges, monuments, and neighborhoods across the land were illuminated in FRAXA’s signature teal. Lighting Up Teal for Fragile X was the result of work of a team of passionate FRAXA volunteers.
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Targeting 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.
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$19,285 Raised for Fragile X Research at Callum Cup IV
The Millburn Football Club in Millburn, New Jersey hosted their 4rd annual Callum Cup. This intra-club charity match (all proceeds being donated to FRAXA) has become the marquee event of the Millburn FC calendar, played in honor of Callum Murphy, the son of club goalkeeper, Andrew Murphy. Callum was diagnosed with Fragile X syndrome when he was 2 years old.
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NH 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.
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20 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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Patrick’s PALS 23rd Annual Basketball Tournament Raises $140,000 for Fragile X Research
Patrick’s PALS has grown from a twelve-team tournament to a 36-team extravaganza! On four half-courts, 18 first-round games set teams on a path to the winners or losers bracket. After that, it was all about staying alive and avoiding elimination by not losing two games. In the end, two veteran teams faced off for the rights to ensure their names would be engraved on the PALS Trophy: the multiple-past-champion Kline Team and the always-in-the-mix Gray Team (pictured above). Gray entered the finals with one loss, so they needed to beat Kline twice. That they did to become the Champions of Patrick’s PALS XXIII!
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Correcting Sensory Processing in Fragile X Mice by Modulating Kv3.1
FRAXA has awarded a $90,000 grant to Carlos Portera-Cailliau, PhD and Nazim Kourdougli, PhD at UCLA to investigate whether a novel drug can rescue sensory processing deficits in Fragile X mice. People with Fragile X have similar problems in sensory processing. This new drug acts on Kv3.1, a promising Fragile X treatment target also being pursued by UK-based Autifony Therapeutics based on FRAXA-funded research done at Yale.
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A Day in the Lab with FRAXA Investigator Dr. Tue Banke
Recently Laurie Bowler and her 19-year-old son Casey, who has Fragile X syndrome, visited FRAXA research grant recipient Dr. Tue Banke at his University of Washington laboratory. We hope you enjoy Laurie’s wonderful description of their adventure! FRAXA awarded $90,000 to Dr. Banke to study the Developmental Profile of Glutamatergic Synapses in Fragile X.
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Gene Therapy Translational Studies for Fragile X Syndrome
With this $90,000 award from FRAXA Research Foundation, Drs. Ernest Pedapati, Christina Gross, and student Lindsay Beasley will pursue preclinical gene therapy approaches using AAV (adeno-associated virus) vectors for treating Fragile X syndrome at Cincinnati Children’s Hospital. Dr. Craig Erickson elaborates about this in this video.
Read moreLandmarks Light Up Fragile X Awareness Day
On Fragile X Awareness Day, July 22, 2019, buildings, bridges, and monuments across the U.S. and Canada — including Niagara Falls — will be illuminated in FRAXA’s signature Teal to spread the word about Fragile X syndrome.
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Clinical Trial of Metformin for Fragile X Syndrome
Metformin is commonly prescribed to control high blood sugar in type 2 diabetes. With a $50,000 grant from FRAXA Research Foundation, Dr. Artuela Çaku and Dr. Francois LePage are conducting an open-label clinical trial of metformin for children and adults with Fragile X syndrome, at the University of Sherbrooke in Canada.
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Developmental Profile of Glutamatergic Synapses in Fragile X
FRAXA Research Foundation has awarded a $90,000 research fellowship to Dr. Tue Banke. With this award, Dr. Banke is investigating how glutamate receptors at neuronal synapses – essential building blocks of learning and memory – are impacted in Fragile X syndrome. Dr. Banke recently left Aarhus University in Denmark to continue his research first as a visiting scholar and now as an assistant professor at the University of Washington.
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