Dave Bjork, Author at Fragile X Research - FRAXA Research Foundation

One Person Can Make a Difference

Dave Bjork Events Recap February 15, 2019February 18, 2019

When Ellen Skala, also referred to as Elle, contacted us in August 2018 about creating a personal fundraising campaign for FRAXA, we were excited about her interest in supporting our mission. Elle set a goal to raise $10,000 for Fragile X research by her birthday, and she committed to shaving her head if she met her fundraising goal!

Fragile X Research has More Runners in the Race

Dave Bjork FRAXA Updates January 31, 2019January 31, 2019

We asked for your help to get more runners in the race to find effective treatments and a cure for Fragile X, and you came through for us. Thank you all so much! FRAXA’s 2018 year-end annual appeal raised $733,017 to fund new Fragile X research!

Boys Basketball Fundraiser Kicks Off The Season of Giving

Dave Bjork Events Recap December 6, 2018December 6, 2018Patrick's PALS

On Saturday morning, November 17, 60 boys, their parents and a bunch of volunteers gathered in Newton, MA for the 3rd annual 3 on 3 basketball tournament, sponsored by the Newton Athletic Association (NAA), a program of Newton Community Education. The event is a fun competition of teams of three players competing for bragging rights of which team is king of the local youth basketball program.

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).

How Promising is CRISPR for Fragile X?

Dave Bjork Research Updates • Todd, Peter August 14, 2018February 12, 2019CRISPR, FXTAS, mGluR, PSD-95

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.

Ringing the Bell at the New York Stock Exchange for Fragile X Awareness

Dave Bjork Events Recap • FRAXA Updates July 16, 2018July 20, 2018autism

FRAXA Research Foundation was honored to be part of the opening bell ringing ceremony at the New York Stock Exchange (NYSE) on July 5, 2018. We were there to raise awareness for Fragile X along side the National Fragile X Foundation. FRAXA President Katie Clapp and Director of Community Relations Dave Bjork attended with over 30 Fragile X family members and friends, including 4 self-advocates. This was a great opportunity to raise awareness of Fragile X on a big stage at an iconic place. The event was also carried live on television on CNBC, giving FRAXA and Fragile X broad reach around the world.

FRAXA Biotech Games™ – Broadening the Base for Fragile X Research

Dave Bjork Events May 23, 2018June 14, 2018

We are proud to announce that the First Annual FRAXA Biotech Games™ are coming to Boston in September 2018. This event is a “friendly” competition between leading biotech companies in greater Boston in a series of back yard lawn games including Cornhole, KanJam, Bucketball and Ladder golf. The event will take place on the campus of Massachusetts Institute of Technology (MIT) and funds raised will support a FRAXA Fragile X research grant to the lab of Dr. Mark Bear at the MIT Picower Institute.

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”.

FRAXA Research Grants Drive Big Investments in Fragile X

Dave Bjork Bhattacharyya, Anita • Canal, Clinton E. • Kaczmarek, Leonard • Research Updates • Zhao, Xinyu March 28, 2018July 10, 2018Autifony Therapeutics, FRAXA-DVI, Fulcrum Therapeutics, serotonin, sound

Most people know that FRAXA supports academic research at many institutions such as Harvard University, University of Pennsylvania, Massachusetts Institute of Technology, and Yale University. However, FRAXA is also working with more than 30 pharmaceutical companies around the world. Mike spends a lot of his time advising and collaborating with industry partners.

Impact of the Fragile X Community

Dave Bjork Erickson, Craig • Events Recap • FRAXA Updates • Huber, Kimberly • Richter, Joel • Warren, Stephen February 2, 2018July 9, 2018cancer, hyperexcitability

At FRAXA Research Foundation, we are truly grateful for our Fragile X community and thousands of donors. We couldn’t keep moving the ball forward in research without your support. Each year FRAXA invests over $1 million in Fragile X research thanks to your support. Because we supported these three researchers, we were able to secure another $35 million in research aimed at identifying clinical trial outcome measures that will lead to human trials of promising treatments for those affected by Fragile X.