Advocacy

Advocacy 2018-12-03T07:43:54+00:00

Advocate for Fragile X Families

On National Fragile X Foundation Advocacy Day, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated disorders, their families, and policies that support Fragile X families such as  research at the NIH and DOD, research and public health programs at the CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, health insurance, and policies that help improve the status quote for adult and families living with intellectual and developmental disabilities.

Overall, our goal is to be a voice of solutions, work across party lines, and improve the lives and opportunities of people living with Fragile X.

Join us for NFXF Advocacy Day 2019

NFXF Advocacy Day is scheduled for February 25-26, 2019. We hope you can join us—all 150 or so! It is a time to connect with policy makers and other families. We have fun, we learn, and we improve lives. It is not an exaggeration to say we can’t do this without you.

In the sea of voices in DC, the voices from home and from those personally impacted are the most effective. You are the ones that are heard and cause action. Your involvement will make a difference for you and for families impacted—today, tomorrow, and well into the future. 

If you haven’t been before, don’t worry! We take care of everything except getting you to D.C. Once here, we gather in the same hotel and have a training from 1–5 p.m. on Monday afternoon. The training covers what to do, where to go, what to say, and more. We strive to make you comfortable and at ease. We also schedule all of your meetings and coordinate with everyone else coming from your state and congressional district. If your meeting changes, we let you know. Additionally, if you want, we have experienced advocates to mentor you and be there for all of your questions and support.

Many individuals and families stay longer to see the sights. We are working on some special recommendations for our families, such as the 50th Anniversary of the Special Olympics exhibit at the American History Museum. Additionally, this year we are partnering with the Rare Disease Legislative Advocates for Rare Disease Week and may have some additional events that week to participate in. More to come on that.

Who

Anyone who wants to advocate for Fragile X families. We always have a mix of parents, grandparents, family members, doctors, researchers, and clinicians. Siblings and self-advocates are especially encouraged to attend.

When

Monday, February 25-Tuesday, February 26, 2019.
Arrive by 1 PM on Monday and leave Tuesday evening.

Where

Washington Marriott
Wardman Park,
2660 Woodley Rd NW
Washington, D.C.

Cost

$25 registration fee plus any travel expenses. The NFXF rate at the Marriott is $209/night.

If you have any questions, please reach out to me, Dan Whiting, NFXF Director of Communications and Government Relations, at dan@fragilex.org.

BOOK YOUR ADVOCACY DAY HOTEL
Register for Advocacy Day

Congressional Fragile X Caucus

The Congressional Fragile X Caucus’ mission is to increase awareness of the public and private efforts underway to treat patients and develop therapies, and will identify ways Congress and federal departments can better serve families impacted by Fragile X. Learn more about the Fragile X Caucus.

Public Policy Agenda

We are currently advocating for:

  • Support the ACE KIDS Act Improves Medicaid services for children with “complex medical conditions,” such as Fragile X syndrome.
    Contact your members of Congress about this now
  • Cosponsor the RISE Act (H.R. 2782 and S. 1295) Allows individuals to use existing individualized education programs (IEPs) to qualify for special services in post-secondary institutions.
  • Maintaining or increasing current levels of funding for Fragile X programs at CDC, NIH, and the DOD.
  • Support the SELF DRIVE Act (H.R. 3388) or AV START Act (S. 1885) Establishes the potential to use self-driving cars for those who are not able to drive, if the technology is deemed safe by the federal government. The House passed H.R. 3388 to authorize the federal government to research and promulgate regulations.
  • Co-sponsor the OPEN Act to open the possibility of “orphan” drugs to be used for Fragile X treatments and a cure.
  • Improving Medicaid, SSI, SSDI, and health insurance availability for people living with Fragile X and other disabilities.
  • Join the Congressional Fragile X Caucus.

Accomplishments

Siblings and self advocates on the steps of the U.S. CapitolOur advocacy efforts:

  • Helped in securing approximately $350 million in federal funding for Fragile X research and programming.
  • An annual Advocacy Day in Washington, D.C.
  • A national Fragile X Public Health Program at the CDC’s National Center on Birth Defects and Developmental Disabilities.
  • Fragile X research funding by the Department of Defense (DOD).
  • A comprehensive National Institutes of Health (NIH) Blueprint to guide research targeting all Fragile X-associated disorders.
  • The establishment of ABLE Accounts, which are tax-deferred savings accounts for adults living with disabilities, similar to 529 college savings accounts.

Your participation makes a difference because local voices are the most effective.

Join Our Advocacy Team

Advocacy Resources

Contact Congress and Register to Vote
NFXF Advocacy Tool to email Congress, register to vote, and more.
Join the NFXF Advocacy Facebook Group
A place to discuss and keep abreast of advocacy efforts.
Join the NFXF Star Local Advocate Program
The STAR Local Advocacy program helps you advocate with your members of Congress when they are home.
Letter to Congress to Support CDC Funding
The NFXF joined other organizations to support CDC funding.
Letter to Congress to Support NIH Funding
The NFXF joined other organizations to support NIH funding.
Family Letter on Budget and Healthcare
A letter template for you to use to contact your member of Congress about health insurance, Medicaid, and SSI/SSDI.
House Appropriations Letter for FY2019
House letter to the Appropriations Committee to support Fragile X programs and funding for FY19.
Senate Appropriations Letter for FY2019
Senate letter to the Appropriations Committee to support Fragile X funding and programs for FY19.

Help support our advocacy efforts