National Institutes of Health Releases Fragile X Strategic Plan

National Institutes of Health Releases Fragile X Strategic Plan

FRAXA Program Coordinator, Elle Skala, and long time FRAXA supporter and previous Board Member, Mary Beth Busby, traveled to the National Institutes of Health earlier this week. The timing of this meeting was perfect because the National Institutes of Health (NIH) just released their long-anticipated Strategic Plan for Fragile X Syndrome, FXTAS, and FXPOI. It will guide federal Fragile X research funding for at least the next five years and open the door for continued funding of the Fragile X Research Centers of Excellence.

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HEADs UP Act Could Increase Access to Health Care

HEADs UP Act Could Increase Access to Health Care

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).

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Takeaways from Fragile X Advocacy Day

Takeaways from Fragile X Advocacy Day

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”.

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FRAXA Invited to The White House, Celebrating The Children’s Health Act

FRAXA Invited to The White House, Celebrating The Children’s Health Act

On short notice, Katie Clapp and Mary Beth and David Busby hurried to attend the January 4 White House ceremony celebrating the bipartisan enactment of the Children’s Health Act of 2000, which boosts federal funding of research on children’s diseases, including Fragile X. This was a rare, unforgettable opportunity to meet both (now, former) President and Senator Clinton in “The Blue Room,” along with several members of Congress

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