Pierce Family Fragile X Foundation Archives • Fragile X Research

Kathan Pierce Named Patriots Difference Maker of the Week!

FRAXA Research Foundation FRAXA Updates September 28, 2018September 28, 2018Pierce Family Fragile X Foundation

FRAXA Board Member and co-founder of The Pierce Family Fragile X Foundation, Kathan Pierce, has been named this week’s 2018 Patriots Difference Make of the Week! This honor is given by the NFL’s New England Patriots Foundation. According to Chairman and CEO Robert Kraft, “We enjoy shining the light on local volunteers that are committed to improving the lives of children and families across the region and we hope that this inspires our fans to get more involved in their communities.”

Hope for the Holidays Gala 2018

FRAXA Research Foundation September 14, 2018September 14, 2018Pierce Family Fragile X Foundation

Come enjoy an evening with family and friends as The Pierce Family Fragile X Foundation kicks off the season of giving!

There will be great food, cocktails, music, silent auction, live auction and raffles for your enjoyment.

Make this night part of your holiday traditions!

HEADs UP Act Could Increase Access to Health Care

Dave Bjork Advocacy August 24, 2018autism, Pierce Family Fragile X Foundation

I was recently contacted by my U.S. Congressman, Seth Moulton (Massachusetts 6th District) with a request to support a new bill he’s introduced with Gregg Harper (Mississippi 3rd District).

The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act, or the HEADs UP Act of 2018 was introduced on the 50th anniversary of the signing of the ADA. This legislation would designate people with Intellectual and Developmental Disabilities (I/DD) as a Medically Underserved Population (MUP).

FRAXA Funded Researchers Present at MA Fragile X Conference

FRAXA Research Foundation Erickson, Craig • Events Recap • Wilkinson, Carol April 9, 2018November 13, 2018AstraZeneca, AZD7325, EEG, Pierce Family Fragile X Foundation

On Saturday Boston Children’s Hospital (BCH) hosted a Fragile X educational conference, Success Strategies for Individuals and Families Impacted by Fragile X and two of our funded researchers, Dr. Craig Erickson, and Carol Wilkinson, MD, PhD, presented giving an update on their current Fragile X clinical trials. Both being funded by FRAXA.

Fragile X Clinical Trial of New PDE4D Inhibitor from Tetra funded by FRAXA

FRAXA Research Foundation 2018 Grants • Berry-Kravis, Elizabeth • Clinical • Clinical Trials • Current Research Grants • Recruiting • Rush University Medical Center April 5, 2018November 20, 2018Alzheimer's, BPN14770, cyclic AMP, FDA, FRAXA-DVI, PDE4, Pierce Family Fragile X Foundation, Tetra Discovery Partners

FRAXA Research Foundation has funded a clinical trial of an investigational new drug, led by Dr. Elizabeth Berry-Kravis at the Rush Fragile X Clinic in Chicago. This trial will treat 30 adult males with Fragile X syndrome with a PDE4D allosteric inhibitor from Tetra Discovery Partners using in a crossover design, so that everyone gets active drug for part of the time and placebo for part of the time.

Takeaways from Fragile X Advocacy Day

Dave Bjork Advocacy • Community March 29, 2018August 24, 2018AstraZeneca, AZD7325, cancer, CRISPR, FDA, Pierce Family Fragile X Foundation

In the first week of March I attended my first Fragile X Advocacy Day to meet with many of the Massachusetts delegation to Congress. While this was my first time advocating for Fragile X research, I’ve been a longtime lung cancer research advocate and have met with many of the same representatives in the past. It was a pleasure to meet with many of the families as my participation in Advocacy Day was in the spirit of “we are all in this together”.

Now Recruiting: Clinical Study of EEG for Young Boys at Boston Children’s Hospital

FRAXA Research Foundation Clinical Trials • Recruiting • Research Updates March 27, 2018November 20, 2018autism, EEG, Pierce Family Fragile X Foundation, sound

Dr. Carol Wilkinson, MD PhD, and Dr. Charles Nelson, PhD, at the Labs of Cognitive Neuroscience at Boston Children’s Hospital are recruiting young boys (2-7 years) with Fragile X syndrome (FXS) to participate in a study investigating how differences in brain activity affect learning, language, and behavior in FXS.

Neural Markers of Cognitive, Language and Behavioral Deficits in Children with Fragile X

FRAXA Research Foundation 2017 Grants • 2018 Grants • Biomarkers • Boston Children's Hospital • Clinical • Clinical Trials • Current Research Grants • Harvard University • Nelson, Charles A. • Recruiting • Wilkinson, Carol March 16, 2018November 20, 2018autism, EEG, Pierce Family Fragile X Foundation

This 2017 grant of $90,000 over two years enabled Dr. Wilkinson to study EEG in young children with Fragile X syndrome at Boston’s Children’s Hospital. She is working with principal investigator, Dr. Charles Nelson, Professor of Pediatrics at Harvard Medical School and a specialist in cognitive neuroscience. Co-funded by the Autism Science Foundation and the Pierce Family Fragile X Foundation.

MicroRNA Mediated Astroglial GLT1 Dysregulation in Fragile X

FRAXA Research Foundation 2017 Grants • 2018 Grants • Current Research Grants • Disease Mechanisms • Higashimori, Haruki • Men, Yuqin • Treatment Targets • Tufts University • Yang, Yongjie September 30, 2017August 22, 2018astrocytes, autism, glutamate, Pierce Family Fragile X Foundation

Almost all brain research focuses on neurons – nerve cells. However, the brain has many more glial cells which support, nourish, and protect the neurons. FRAXA Research Foundation awarded a 2017 grant $90,000 to support Dr. Yang’s studies of how changes in glial cells contribute to Fragile X syndrome. This grant is funded by a grant from the Pierce Family Fragile X Foundation.

Investigating Gene Reactivation to Treat Fragile X Syndrome

FRAXA Research Foundation 2016 Grants • 2017 Grants • Current Research Grants • Genetic Rescue • Harvard University • Lee, Jeannie • Massachusetts General Hospital September 22, 2017April 28, 2018CRISPR, Pierce Family Fragile X Foundation

With a $180,000 grant from FRAXA Research Foundation from 2016-2017, Dr. Jeannie Lee and her team at Harvard are working to reactivate the gene that is silenced in Fragile X syndrome.

Neural Markers of Fragile X: A Powerful New Tool for Clinical Trials

J. Dora Levin Biomarkers • Boston Children's Hospital • Clinical • Harvard University • Nelson, Charles A. • Research Updates • Wilkinson, Carol August 17, 2017July 30, 2018Autifony Therapeutics, autism, EEG, hypersensitivity, ion channel, Pierce Family Fragile X Foundation, sleep, sound

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

FRAXA Announces 3 New Board Members

FRAXA Research Foundation FRAXA Updates June 10, 2016October 15, 2018Pierce Family Fragile X Foundation

FRAXA, the world’s leading organization fully committed to finding a cure for Fragile X syndrome, has announced Theodore G. Coutilish, Kathan Pierce, and Jessica Haugan have joined its Board of Directors. Kathan Pierce Kathan Pierce most recently held senior finance positions at Liberty Mutual Insurance and Fidelity Investments. She and her husband, Michael, live in Medford, Mass., with their two sons, Graham and Reid, who were diagnosed in 2015 and 2016 with FXS. She holds a BS in Business Administration from Villanova University and an MBA and Master of Science in Accounting from Boston College. She is co-founder of The Pierce Family Fragile X Foundation, a nonprofit whose mission is to raise funds to help find a cure for Fragile X and raise awareness. Jessica Haugen Jessica Haugen of Thompson, N.D., has served the youth of North Dakota for the past 11 years at Ruth Meiers Adolescent Center, a residential treatment center that focusesRead more