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 1st). 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!
That brings me to 2022 – time to SAVE THE DATE! NFXF Advocacy Day 2022 is planned for Monday, February 28 and Tuesday, March 1. It will be held in…
Oh, the suspense! We are planning (hoping?) to hold an in-person Advocacy Day in Washington, DC. We have a contract for rooms at the Embassy Suites in Crystal City, VA at $179/night+taxes. However, we realize that circumstances could change between now and then, and we are prepared to hold either a hybrid or fully virtual event. For now – please save the date. Our advocacy successes over the past 20 years are due directly to the work of NFXF Advocates. You make it possible!
These past few months we have worked to support several initiatives to help create opportunities for better lives for those living with Fragile X and other intellectual/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.
Look for updates on each of these over the next few weeks and months.
Our success is based on partnerships. That is 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 is your partnership on NFXF Advocacy efforts that is critical to making a difference for all families living with Fragile X. Thank you – and I hope to see you at NFXF Advocacy Day 2022.