By Dan Whiting

You have likely seen lots of news about Congress trying to agree on a budget for the next fiscal year (which actually started on October 1). This has delayed the annual appropriations bills (since you have to know how much you can spend before you allocate how you spend it). However, our research funding priorities at the National Institutes of Health, Department of Defense, and CDC look promising once the bigger, unrelated issues, are resolved. Nice work, again, NFXF Advocates!

These past few months we’ve worked to support several initiatives to help create opportunities for better lives for those living with Fragile X and other intellectual and developmental disabilities, including:

  • Credit for Caring Act — Provides for a tax credit for caring for an adult, similar to the Child Tax Credit.
  • ABLE Employment Flexibility Act – Allows employers to contribute to an employees’ ABLE account instead of a 401(k).
  • Charlotte Woodward Organ Transplant Discrimination Prevention Act – Prevents the use of a disability to determine a patient’s eligibility for an organ transplant.
  • Orphan Drug Tax Credit – Fighting attempts to weaken the tax credit to pay for other spending proposals.
  • Disability Employment Incentive Act – Expands tax credits and deductions that are available for employers who hire and retain employees with disabilities.
  • STAT Act – Creates a Rare Disease Center of Excellence at the FDA to improve rare disease coordination, engagement, and policy development – all with the goal of accelerated rare disease therapy development.

Our success is based on partnerships. That’s why I work closely with other like-minded groups to advance our causes and serve in leadership roles at both the EveryLife Foundation as co-chair of the Public Policy Committee, and on the executive committee for the Friends of the National Center for Birth Defects and Developmental Disorders at the CDC.

But it’s your partnership on NFXF Advocacy efforts that is critical to making a difference for all families living with Fragile X. Thank you.

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Author Dan Whiting

Dan Whiting
Dan served as the NFXF Director of Community Impact from 2017 to 2022. He has over 23 years of experience in public policy and communications, including 11 years as a staff member for a U.S. Senator, in the Bush Administration as Chief of Staff at an agency, and as a senior strategist for communication initiatives across the DOD. During his time at the NFXF, he was passionate about helping individuals with intellectual and developmental disabilities live better lives.