By Hilary Rosselot and Dillon Kelley
NFXF Executive Director and Advocacy Ambassador to the NFXF Board of Directors share their thoughts on the CEO Commission’s recent Hill Day
The NFXF Executive Director, Hilary Rosselot, and the Advocacy Ambassador to the NFXF Board of Directors, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community with you.
Hilary: Per their website, “The CEO Commission for Disability Employment was founded by Voya Financial, the Society for Human Resource Management (SHRM), and the National Down Syndrome Society (NDSS), to advance disability inclusive employment by inspiring and engaging business leaders to drive change through policy, practice, and culture.”
Dillon: I would summarize their work as “advocating for people with disabilities”.
Hilary: And that is just what we did!
There were so many different groups represented at the CEO Commission’s Hill Day, including the National Down Syndrome Society (another patient advocacy organization like the NFXF), all sizes of businesses- from corporations to entrepreneurial businesses- and self-advocates! We all attended a training where we learned about the suite of bills we were advocating for and heard from great speakers and panels on the value of disability inclusive employment and the positive changes they have seen in their workforce by being a truly inclusive workplace! While some of the asks are likely going to be multi-Congress efforts, we were excited to know many had traction and bipartisan support.
Learn more about the Asks
- SSI Savings Penalty Elimination Act (R.5408/S.2767)
- Disability Employment Incentives Act (DEIA) (3076)
- ABLE Suite of Bills
- Supporting Disabled Entrepreneurs Act (3528)
- Transformation to Competitive Integrated Employment Act (TCIEA) (R.1263/S.533)
It’s important to advocate with our partners like the CEO Commission because our collective voice is stronger and louder together. Equity in employment and meaningful work is a topic that is near and dear to our hearts and the hearts of so many in the disability space. The NFXF will continue to host their own Advocacy Day, and participating in additional Hill Days and advocacy events like these only furthers our own efforts.
A Conversation with Hilary and Dillon
Hilary: How were you feeling about going?
Dillon: I felt good going in—the Hill Day was actually my birthday!
Hilary: It was fun to celebrate your birthday on the Hill with you! Let’s talk about our meetings, who did we meet and how the meetings were?
Dillon: We had three meetings where we met with Staff from each office. We met with one Representative’s Legislative Assistant, a Senator’s Legislative Correspondent, and another Senator’s Subcommittee Staff Director. It was really interesting! Meetings were set up based on the different committees the Members are a part of and if they were sponsoring or not sponsoring certain bills.
Hilary: We are always encouraged to share our stories during our meetings. What did you get to share about yourself?
Dillon: I shared my experience with employment and some of the things that have been challenging for myself and other self-advocates. Self-Advocates want to work! Everyone has different abilities, but we can and want to work, especially without the fear of losing our benefits. I enjoyed meeting other self-advocates at the event and hope to meet even more at future CEO Commission events and Hill Days.
Hilary: I think you sharing your story made an impact on the staff we spoke with. How did you feel the experience overall?
Dillon: It felt good because it is important to advocate & tell your story! I would encourage everyone to advocate for themselves.
Hilary: Want to tell your story and make a difference in our advocacy initiatives? Consider attending the NFXF’s Advocacy Day this coming February 24-25, 2025. Details to be released soon.
Dillon, would you participate in the CEO Commission Hill Day (or any Hill Day) again?
Dillon: (without hesitation) YES! I would do it again, it is valuable to continue advocating for people with intellectual disabilities, and people with disabilities.
Training and Hill Day Photos
There was an awesome panel about Successes, Challenges, and the Future for Disability Inclusive Employment with representatives from Microsoft and the NIH. Dillon was an active participant in the training, sharing his own story and asking great questions.
Hill Day was amazing! During one of our big breaks between meetings, Dillon needed coffee!
about
Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!
learn more
Advocacy | Stand Up for Fragile X
Learn more about the NFXF’s Advocacy work by visiting our Advocacy webpage.
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