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FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theHOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theHOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
MEMORIAL TRIBUTE TO DR. STEPHEN T. WARREN • FRAGILE X Dr. Stephen T. Warren passed away on June 6, 2021. In 1991, Dr. Warren discovered the genetic mutation which causes Fragile X Syndrome and named it FRAXA. Donations can be made in his honor to FRAXA ResearchFoundation.
WORLD FRAGILE X DAY • FRAGILE X RESEARCH World Fragile X Day celebrates families impacted by Fragile X and highlights progress of research to find a cure. On World Fragile X Day we shine a light on Fragile X by illuminating monuments and landmarks around the world. We gather with friends and family to celebrate lovedBOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the FRAGILE X SYNDROME: A GUIDE FOR PARENTS • FRAGILE X Fragile X Syndrome: a Guide for Parents. This guide is intended to help families cope with the daily challenges of living with a child who has Fragile X syndrome. Many tips offered here may also help parents with children affected by other disabilities. We thank MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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. FRAGILE X RESEARCH: 3 AREAS OF FOCUS • FRAGILE X RESEARCH Clinical trials are the ultimate validation that a therapy is safe and effective for use in humans. We are funding Fragile X clinical trials to accelerate the development of drugs currently being tested, and that are viewed most promising to treat Fragile X. Our Targeted Translational Research has identified several other promising candidates that we would like to move into trials. FRAGILE X TESTING IS DONE BY DIRECT DNA BLOOD TEST Any Doctor Can Order the Fragile X Test. Once the blood sample is taken, it is sent to a lab that offers the test. Most major U.S. medical centers offer testing for Fragile X. It can take several weeks to get results. The cost is usually covered by health insurance. Prenatal testing can be done by CVS (chorionic villus sampling) oramniocentesis.
CAN CRISPR CURE FRAGILE X SYNDROME? • FRAGILE X RESEARCH On February 15, 2018, Dr. Rudolf Jaenisch and colleagues at MIT’s Whitehead Institute for Biomedical Research reported Rescue of Fragile X syndrome neurons by DNA methylation editing of the FMR1 gene.Fragile X syndrome occurs when a single gene, FMR1, shuts down.In this study, the team used CRISPR/Cas9 to remove the molecular tags that keep the mutant gene shut off in Fragile X neurons.MEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
HOW PROMISING IS CRISPR FOR FRAGILE X? • FRAGILE X Peter Todd, MD, PhD, Assistant Professor in the Department of Neurology in the University of Michigan Medical School, was recently awarded a FRAXA Research Grant for gene reactivation with the use of CRISPR. In this interview he tells us about CRISPR in Fragile X research, how realistic is it that it could turn the Fragile X gene back on, and if it can really be a cure for Fragile X. FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
MEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
ANXIETY AND DEPRESSION IN PARENTS OF FRAGILE X CHILDREN These are the symptoms of Major Depression: 1. depressed or irritable mood most of the day, nearly every day (persistent dysphoria) 2. diminished interest or pleasure in most activities (anhedonia) 3. significant change in appetite or weight (either up or down) 4. insomnia or oversleeping nearly every day.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
MEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
ANXIETY AND DEPRESSION IN PARENTS OF FRAGILE X CHILDREN These are the symptoms of Major Depression: 1. depressed or irritable mood most of the day, nearly every day (persistent dysphoria) 2. diminished interest or pleasure in most activities (anhedonia) 3. significant change in appetite or weight (either up or down) 4. insomnia or oversleeping nearly every day.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
MEMORIAL TRIBUTE TO DR. STEPHEN T. WARREN • FRAGILE X Dr. Stephen T. Warren passed away on June 6, 2021. In 1991, Dr. Warren discovered the genetic mutation which causes Fragile X Syndrome and named it FRAXA. Donations can be made in his honor to FRAXA ResearchFoundation.
WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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.BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the FRAGILE X SYNDROME: A GUIDE FOR PARENTS • FRAGILE X Fragile X Syndrome: a Guide for Parents. This guide is intended to help families cope with the daily challenges of living with a child who has Fragile X syndrome. Many tips offered here may also help parents with children affected by other disabilities. We thank FRAGILE X RESEARCH: 3 AREAS OF FOCUS • FRAGILE X RESEARCH Clinical trials are the ultimate validation that a therapy is safe and effective for use in humans. We are funding Fragile X clinical trials to accelerate the development of drugs currently being tested, and that are viewed most promising to treat Fragile X. Our Targeted Translational Research has identified several other promising candidates that we would like to move into trials. FRAGILE X TESTING IS DONE BY DIRECT DNA BLOOD TEST Any Doctor Can Order the Fragile X Test. Once the blood sample is taken, it is sent to a lab that offers the test. Most major U.S. medical centers offer testing for Fragile X. It can take several weeks to get results. The cost is usually covered by health insurance. Prenatal testing can be done by CVS (chorionic villus sampling) oramniocentesis.
CAN CRISPR CURE FRAGILE X SYNDROME? • FRAGILE X RESEARCH On February 15, 2018, Dr. Rudolf Jaenisch and colleagues at MIT’s Whitehead Institute for Biomedical Research reported Rescue of Fragile X syndrome neurons by DNA methylation editing of the FMR1 gene.Fragile X syndrome occurs when a single gene, FMR1, shuts down.In this study, the team used CRISPR/Cas9 to remove the molecular tags that keep the mutant gene shut off in Fragile X neurons.COMING FULL CIRCLE
Co-Founder Kathy May returns after two decades to write grants. It’s about discovering new forms of treatments to enhance the mental, emotional and social growth of those affected by Fragile X. “And there will be a cure,” she said. “FRAXA is the reason for this hope. I have come full circle to FRAXA and feeling more hopeful than I have in many years.”FRAGILE X SYNDROME
St John’s Innovation Centre, Cowley Road Cambridge, CB4 0WS, UK Reg. No 09018507 Tel: +44 (0) 1223 560848 Email: info@healx.io Website:www.healx.io
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. MEMORIAL TRIBUTE TO DR. STEPHEN T. WARREN • FRAGILE X Dr. Stephen T. Warren passed away on June 6, 2021. In 1991, Dr. Warren discovered the genetic mutation which causes Fragile X Syndrome and named it FRAXA. Donations can be made in his honor to FRAXA ResearchFoundation.
MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State WHAT TREATMENTS WORK FOR FXTAS? • FRAGILE X RESEARCH One of the available treatments for Alzheimer’s Disease is a glutamate receptor blocker called memantine (Namenda), and dementia specialists think this drug could be effective in treating a wide range of neurodegenerative diseases. It has been found to be effective in treating Lewy Body Dementia, a disorder which causes parkinsonismand
FRAGILE X ADULTS TURNING 22. WHAT'S NEXT? Turning 22 with Fragile X Syndrome – What’s Next? Linee Baird Community September 12, 2016. December 26, 2019. Abilify, amyloid precursor protein, aripiprazole, prepulse inhibition. Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by thistransition.
KATIE CLAPP
Katie Clapp FRAXA Updates February 5, 2020. February 5, 2020. All of us here at FRAXA were very sad to learn that Mary Higgins Clark passed away on January 31, 2020, at the age of 92. Mary Higgins Clark was a tireless champion for Fragile X research. Mary put FRAXA on the map in 1997 when she made a $1 million donation over five years to solve FRAGILE X AWARENESS DAY ORIGINS AND A TRIBUTE • FRAGILE X 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 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. FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State FRAGILE X ADULTS TURNING 22. WHAT'S NEXT? Turning 22 with Fragile X Syndrome – What’s Next? Linee Baird Community September 12, 2016. December 26, 2019. Abilify, amyloid precursor protein, aripiprazole, prepulse inhibition. Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by thistransition.
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.KATIE CLAPP
Katie Clapp FRAXA Updates February 5, 2020. February 5, 2020. All of us here at FRAXA were very sad to learn that Mary Higgins Clark passed away on January 31, 2020, at the age of 92. Mary Higgins Clark was a tireless champion for Fragile X research. Mary put FRAXA on the map in 1997 when she made a $1 million donation over five years to solve FRAGILE X SYNDROME PROTEIN LINKED TO BREAST CANCER Claudia Bagni (VIB/KU Leuven, Belgium, and the University of Rome, Italy) and colleagues have identified the way Fragile X Mental Retardation Protein or FMRP contributes to the progression of breast cancer. The researchers demonstrated that FMRP acts as a master switch controlling the levels of several proteins involved in different stages of aggressive breast cancer, including the invasion of FRAGILE X AWARENESS DAY ORIGINS AND A TRIBUTE • FRAGILE X 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 MICHAEL TRANFAGLIA, MD, AUTHOR AT FRAGILE X RESEARCH December 26, 2019. TAT (Trans-Activator of Transcription) A Fragile X presentation was given by Michael Tranfaglia, MD, FRAXA Medical Director at the IDD-C conference at Stanford University on April 21, 2015. This was an in-depth discussion of how research has brought us to the point of clinical trials, the problems encountered in recenttrials
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT. FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State FRAGILE X ADULTS TURNING 22. WHAT'S NEXT? Turning 22 with Fragile X Syndrome – What’s Next? Linee Baird Community September 12, 2016. December 26, 2019. Abilify, amyloid precursor protein, aripiprazole, prepulse inhibition. Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by thistransition.
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.KATIE CLAPP
Katie Clapp FRAXA Updates February 5, 2020. February 5, 2020. All of us here at FRAXA were very sad to learn that Mary Higgins Clark passed away on January 31, 2020, at the age of 92. Mary Higgins Clark was a tireless champion for Fragile X research. Mary put FRAXA on the map in 1997 when she made a $1 million donation over five years to solve FRAGILE X SYNDROME PROTEIN LINKED TO BREAST CANCER Claudia Bagni (VIB/KU Leuven, Belgium, and the University of Rome, Italy) and colleagues have identified the way Fragile X Mental Retardation Protein or FMRP contributes to the progression of breast cancer. The researchers demonstrated that FMRP acts as a master switch controlling the levels of several proteins involved in different stages of aggressive breast cancer, including the invasion of FRAGILE X AWARENESS DAY ORIGINS AND A TRIBUTE • FRAGILE X 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 MICHAEL TRANFAGLIA, MD, AUTHOR AT FRAGILE X RESEARCH December 26, 2019. TAT (Trans-Activator of Transcription) A Fragile X presentation was given by Michael Tranfaglia, MD, FRAXA Medical Director at the IDD-C conference at Stanford University on April 21, 2015. This was an in-depth discussion of how research has brought us to the point of clinical trials, the problems encountered in recenttrials
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT.HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCH Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries in WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
BOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with the MECHANISMS OF TOLERANCE TO CHRONIC MGLUR5 INHIBITION Over the past few years, both Novartis and Roche sponsored large-scale clinical trials of metabotropic glutamate receptor 5 (mGlu5) negative allosteric modulators (NAMs) to treat Fragile X syndrome (FXS). With a $90,000 grant from FRAXA Research Foundation in 2015-2017, Dr. Mark Bear's team will explore if mGlu5 NAMs dosed chronically causes tolerance, and if so, how it develops and to RETT SYNDROME ARCHIVES • FRAGILE X RESEARCH Anavex 2-73 is a sigma-1 receptor agonist being developed for autism spectrum disorders, including Rett syndrome and Fragile X syndrome, and for Alzheimer’s disease. Anavex Life Sciences presented the data at the Gordon Research Conference for Fragile X and Autism-Related Disorders, held June 5-10, 2016 in Mount Snow, VT. FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State FRAGILE X ADULTS TURNING 22. WHAT'S NEXT? Turning 22 with Fragile X Syndrome – What’s Next? Linee Baird Community September 12, 2016. December 26, 2019. Abilify, amyloid precursor protein, aripiprazole, prepulse inhibition. Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by thistransition.
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.KATIE CLAPP
Katie Clapp FRAXA Updates February 5, 2020. February 5, 2020. All of us here at FRAXA were very sad to learn that Mary Higgins Clark passed away on January 31, 2020, at the age of 92. Mary Higgins Clark was a tireless champion for Fragile X research. Mary put FRAXA on the map in 1997 when she made a $1 million donation over five years to solve FRAGILE X SYNDROME PROTEIN LINKED TO BREAST CANCER Claudia Bagni (VIB/KU Leuven, Belgium, and the University of Rome, Italy) and colleagues have identified the way Fragile X Mental Retardation Protein or FMRP contributes to the progression of breast cancer. The researchers demonstrated that FMRP acts as a master switch controlling the levels of several proteins involved in different stages of aggressive breast cancer, including the invasion of FRAGILE X AWARENESS DAY ORIGINS AND A TRIBUTE • FRAGILE X 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 MICHAEL TRANFAGLIA, MD, AUTHOR AT FRAGILE X RESEARCH December 26, 2019. TAT (Trans-Activator of Transcription) A Fragile X presentation was given by Michael Tranfaglia, MD, FRAXA Medical Director at the IDD-C conference at Stanford University on April 21, 2015. This was an in-depth discussion of how research has brought us to the point of clinical trials, the problems encountered in recenttrials
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCHARBACLOFEN ERARBACLOFEN PLACARBIL Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries inBOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theMEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCHARBACLOFEN ERARBACLOFEN PLACARBIL Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries inBOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theMEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. MEDICATION REFERENCE GUIDE • FRAGILE X RESEARCH adults: can usually start with 25 mg twice a day, increasing as tolerated to 40 mg twice a day; allow 2- 4 weeks for full effect before considering further dose increase; maximum dose quoted by manufacturer is 150 mg/day, but doses above 120 mg/day should be used with caution in Fragile X individuals. MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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. FRAGILE X RESEARCH GRANTS APPLICATION • FRAGILE X RESEARCH FRAXA Fellowships offer $90,000 over Two Years. FRAXA Fellowships provide $45,000 per year for up to 2 years. Application deadline is midnight on February 1, 2021. Priority is given to research with a translational or preclinical focus on Fragile X, which has potential to lead to improved treatment. Fellowships are initially funded forone year
FRAGILE X RESEARCH: 3 AREAS OF FOCUS • FRAGILE X RESEARCH Clinical trials are the ultimate validation that a therapy is safe and effective for use in humans. We are funding Fragile X clinical trials to accelerate the development of drugs currently being tested, and that are viewed most promising to treat Fragile X. Our Targeted Translational Research has identified several other promising candidates that we would like to move into trials. LANDMARKS LIGHT UP FRAGILE X AWARENESS DAY 2020 • FRAGILE This year, on Fragile X Awareness Day, a growing number of buildings, bridges, and monuments — including Niagara Falls — will be illuminated in teal to spread the word about Fragile X and celebrate our community. Although we may not be able to gather in groups this year, we still encourage you to briefly visit or drive by lighting displays and share your experience with us.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State ANXIETY AND DEPRESSION IN PARENTS OF FRAGILE X CHILDREN These are the symptoms of Major Depression: 1. depressed or irritable mood most of the day, nearly every day (persistent dysphoria) 2. diminished interest or pleasure in most activities (anhedonia) 3. significant change in appetite or weight (either up or down) 4. insomnia or oversleeping nearly every day. WHAT TREATMENTS WORK FOR FXTAS? • FRAGILE X RESEARCH One of the available treatments for Alzheimer’s Disease is a glutamate receptor blocker called memantine (Namenda), and dementia specialists think this drug could be effective in treating a wide range of neurodegenerative diseases. It has been found to be effective in treating Lewy Body Dementia, a disorder which causes parkinsonismand
THE PANDEMIC SCRAMBLE When our oldest son, Taylor, was diagnosed at age 2 with Fragile X, the most common inherited cause of mental impairment and autism, brain research suddenly became deeply personal to our family. Please consider making a gift to help accelerate research to find effective treatments and ultimately a cure for Fragile X. FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCHARBACLOFEN ERARBACLOFEN PLACARBIL Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries inBOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theMEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
FRAGILE X SYNDROME RESEARCH & TREATMENT • FRAXA RESEARCHWHAT IS FRAGILE XNEWS & UPDATESRESEARCHABOUT FRAXAGET INVOLVEDCAUSE FRAXA Research Foundation’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities We directly fund research grants and fellowships at top universities around the world. We partner with biomedical and pharmaceutical companies, large and small, to bridge the gap between FRAXA RESEARCH FOUNDATION The US government was spending only $30,000 per year to find a cure! Katie Clapp, Michael Tranfaglia, MD, and Kathy May founded FRAXA Research Foundation in 1994 — a nonprofit, tax-exempt organization based in Newburyport, Mass. Committed to finding a cure for Fragile X, FRAXA has funded more than $30 million in biomedical research,yielding
WE STARTED OUT SMALL, NOW LOOK... • FRAGILE X RESEARCH FRAXA Research Foundation is spreading awareness across the world! We’d love to see you light up our world on July 22 as part of World Fragile X Day!. July 22 has been recognized as Fragile X Awareness Day in the US since its declaration by Congress in 2000. FRAXA SHOP - FRAGILE X MERCHANDISE • FRAGILE X RESEARCH FRAXA Research Foundation shop - Fragile X merchandise including FRAXA swag and handcrafted items made by Fragile X families. WHAT CAUSES FRAGILE X SYNDROME? A SINGLE GENE SHUTS DOWN.SEE MORE ONFRAXA.ORG
WHAT IS FRAGILE X SYNDROME? • FRAGILE X RESEARCH The need for research aimed at treatment is urgent. Fragile X syndrome is a genetic disorder that occurs when a single gene on the X chromosome shuts down. This gene makes a protein needed for normal brain development. In FXS it does not work properly, the protein is not made, and the brain does not develop as it should. FXS can affectboth sexes.
ARBACLOFEN RETURNS AFTER 7 YEARS! • FRAGILE X RESEARCHARBACLOFEN ERARBACLOFEN PLACARBIL Massachusetts, USA (Nov 18, 2020) — Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in Fragile X syndrome (FXS). The company is preparing the regulatory path for market authorization. Allos Pharma was founded to translate breakthrough discoveries inBOARD OF DIRECTORS
Ted is a seasoned marketing communications leader who is the first and only person to serve on the Board of Directors at FRAXA and the National Fragile X Foundation (NFXF). He and his wife, Mary Beth Langan, live in Grosse Pointe Shores, Michigan, along with their son, Andrew, who has FXS. In 2012, NFXF awarded Ted and Mary Beth with theMEET OUR KIDS
Andy is almost 30 years old now. He lives at home with us, his mom and dad, two cats, and a dog. Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad! Andersshowed signs of
HOW TO RUN A GALA
HOW TO RUN A GALA This is a To-Do list for a large, elaborate gala, so if you are planning a smaller event, please don’t panic when lookingat all these steps.
MEDICATION GUIDE FOR FRAGILE X SYNDROME This manual is intended as an aid for parents seeking or considering drug treatment of the behavioral and psychiatric sequellae of Fragile X syndrome. It is designed to enhance parents’ ability to make informed decisions about their children’s medical treatment. MEDICATION REFERENCE GUIDE • FRAGILE X RESEARCH adults: can usually start with 25 mg twice a day, increasing as tolerated to 40 mg twice a day; allow 2- 4 weeks for full effect before considering further dose increase; maximum dose quoted by manufacturer is 150 mg/day, but doses above 120 mg/day should be used with caution in Fragile X individuals. MEET TYLER! • FRAGILE X RESEARCH Meet #FriendofFRAXA Tyler! 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. FRAGILE X RESEARCH GRANTS APPLICATION • FRAGILE X RESEARCH FRAXA Fellowships offer $90,000 over Two Years. FRAXA Fellowships provide $45,000 per year for up to 2 years. Application deadline is midnight on February 1, 2021. Priority is given to research with a translational or preclinical focus on Fragile X, which has potential to lead to improved treatment. Fellowships are initially funded forone year
FRAGILE X RESEARCH: 3 AREAS OF FOCUS • FRAGILE X RESEARCH Clinical trials are the ultimate validation that a therapy is safe and effective for use in humans. We are funding Fragile X clinical trials to accelerate the development of drugs currently being tested, and that are viewed most promising to treat Fragile X. Our Targeted Translational Research has identified several other promising candidates that we would like to move into trials. LANDMARKS LIGHT UP FRAGILE X AWARENESS DAY 2020 • FRAGILE This year, on Fragile X Awareness Day, a growing number of buildings, bridges, and monuments — including Niagara Falls — will be illuminated in teal to spread the word about Fragile X and celebrate our community. Although we may not be able to gather in groups this year, we still encourage you to briefly visit or drive by lighting displays and share your experience with us.FRAXA STAFF
Jennifer Frobish is the proud mom of two children, one of whom lives with Fragile X syndrome. Since his diagnosis in 2010, Jennifer has dedicated her time to supporting families, raising awareness and fundraising for Fragile X. Jennifer has a Bachelor of Arts degree in Organizational Communications from Northern Illinois University and a Master of Science in Education from Illinois State ANXIETY AND DEPRESSION IN PARENTS OF FRAGILE X CHILDREN These are the symptoms of Major Depression: 1. depressed or irritable mood most of the day, nearly every day (persistent dysphoria) 2. diminished interest or pleasure in most activities (anhedonia) 3. significant change in appetite or weight (either up or down) 4. insomnia or oversleeping nearly every day. WHAT TREATMENTS WORK FOR FXTAS? • FRAGILE X RESEARCH One of the available treatments for Alzheimer’s Disease is a glutamate receptor blocker called memantine (Namenda), and dementia specialists think this drug could be effective in treating a wide range of neurodegenerative diseases. It has been found to be effective in treating Lewy Body Dementia, a disorder which causes parkinsonismand
THE PANDEMIC SCRAMBLE When our oldest son, Taylor, was diagnosed at age 2 with Fragile X, the most common inherited cause of mental impairment and autism, brain research suddenly became deeply personal to our family. Please consider making a gift to help accelerate research to find effective treatments and ultimately a cure for Fragile X.Skip to content
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COUNTRIES ARE HOME TO RESEARCH TEAMS WHAT IS FRAGILE X SYNDROME? FRAGILE X SYNDROME (FXS) IS THE MOST COMMON INHERITED CAUSE OF AUTISM AND INTELLECTUAL DISABILITIES. IT AFFECTS 1 IN 4,000 BOYS AND 1 IN 6,000 GIRLS WORLDWIDE. FRAGILE X SYNDROME OCCURS WHEN A SINGLE GENE ON THE X CHROMOSOME SHUTS DOWN. THIS GENE MAKES A PROTEIN NEEDED FOR NORMAL BRAIN DEVELOPMENT. IN FXS IT DOES NOT WORK PROPERLY, THE PROTEIN IS NOT MADE, AND THE BRAIN DOES NOT DEVELOP AS IT SHOULD. __Learn more about Fragile X syndrome HOW DOES FRAXA HELP? FRAXA’S MISSION IS TO FIND EFFECTIVE TREATMENTS AND ULTIMATELY A CURE FOR FRAGILE X SYNDROME. WE DIRECTLY FUND RESEARCH GRANTS AND FELLOWSHIPS AT TOP UNIVERSITIES AROUND THE WORLD. WE PARTNER WITH BIOMEDICAL AND PHARMACEUTICAL COMPANIES, LARGE AND SMALL, TO BRIDGE THE GAP BETWEEN RESEARCH DISCOVERIES AND ACTUAL TREATMENTS. TREATMENTS FOR FRAGILE X ARE LIKELY TO HELP PEOPLE AFFECTED BY AUTISM, ALZHEIMER’S, AND OTHER BRAIN DISORDERS. __Donate to FRAXA's mission__
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WE’RE ALL IN THIS TOGETHER, ONE DAY AT A TIME. As many of you know, FRAXA's mission is to find effective treatment options and ultimately a cure for Fragile X. Right now though, we know that we have to pivot. The Fragile X community has always been the center of our mission and today, there are other ways we can be helpful. We would like to host virtual gatherings that will benefit the Fragile X community and help us all feel connected.Read more
on 07 April 2020 , in FRAXA Updates, by FRAXA Research
Foundation
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FRAXA IS THINKING ABOUT YOU We recognize that with the constantly changing COVID-19 situation around the world, this is an unprecedented time for everyone — a time that, for many, is filled with uncertainty. Like many of you, we have children or adults at home with Fragile X syndrome. We truly understand what a great challenge this can be and are here to lend ahand.
Read more
on 23 March 2020 , in Community• FRAXA Updates
, by FRAXA Research
Foundation
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COMPANIES MOVE TO ADVANCE POTENTIAL COGNITIVE TREATMENT FOR FRAGILE X Tetra Therapeutics and Shionogi announced plans to expand their partnership supporting BPN14770, a treatment candidate for disorders marked by cognitive and memory deficits, including Fragile X syndrome and Alzheimer’s disease. The agreement builds on an earlier collaboration between the two companies, and aims to further accelerate BPN14770’s development and potential marketing. It is currently in clinical testing in both Fragile X and Alzheimer’spatients.
Read more
on 13 March 2020 , in FRAXA Updates, by Fragile X News
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UPCOMING EVENTS
__View full event calendar Friday, May 29, 2020 2020 FRAXA CHARITY GOLF TOURNAMENT – POSTPONED DATE TBA Bradford Country Club, 201 Chadwick Rd, Haverhill, MA 01835* __
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Saturday, May 30, 2020 PATRICK’S PALS XXIV 3-ON-3 BASKETBALL TOURNAMENT Buckingham Browne & Nichols School - Nicholas Athletic Center, Gerrys Landing Road, Cambridge, MA, USA* __
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Saturday, May 30, 2020 7TH ANNUAL FRAGILE X CORNHOLE TOURNAMENT – CANCELED Urbana District Park, Urbana Pike, Frederick, MD, USA* __
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