By Jed Seifert

NFXF Board Member Jed Seifert shares his thoughts on the CEO Commission’s recent Hill Day

Jed Seifert is a co-founder of Stakes Manufacturing and proud employer of all individuals. Jed has a special connection to Fragile X; his brother, Darren, has Fragile X syndrome. Jed has consistently and passionately advocated for disability rights and equitable employment, truly “walking the talk” in his own business. Jed recently represented the NFXF at the Hill Day of our partner, the CEO Commission. Jed shared his reflections on this powerful experience with us.

“Incredible couple days this past week on Capitol Hill standing up for disability rights with the CEO Commission for Disability Employment with so many truly amazing people and having our wonderful annual national meeting. Here are just a few of those amazing people pictured but only a small fraction of the incredible folks who came in from all over the country to fight together for legislation to change archaic and unfair laws that hinder people with disabilities striving for financial independence through meaningful employment and don’t afford them the same rights as every other human being without disabilities:

  • Representative Eleanor Holmes Norton who has a daughter with Down Syndrome, so she knows all too well the challenges facing the community and has been incredibly supportive of our mission.
  • Kayla McKeon, the first ever registered lobbyist with Down Syndrome. She is one of the bravest and best self-advocates I have met in my life.
  • John Cronin, a young man with Down Syndrome, who founded John’s Crazy Socks, an incredibly successful sock brand, with his dad Mark X. Cronin, who together speak all over the country as brilliant self-advocates.
  • Nish Parikh and Hetal Parikh co-founders of Rangam a global minority, woman, and disability-owned workforce solutions company who is one of our newest partners.
  • James Atwater, deaf co-founder of InReturn Strategies, a marketing solution for innovative companies who desire to tap into the disability community and their families and friends for employment opportunities.
  • Patrick Bardsley, a fellow colleague from the print industry and CEO of Spectrum Designs Foundation, a screenprinting and embroidery company who the majority of their employees are autistic people.
  • Representative Eleanor Holmes and group of Advocates
  • Kayla McKeon, the first ever registered lobbyist with Down Syndrome.
  • John Cronin, a young man with Down Syndrome, his dad, and other Advocates.

“We are so grateful for Kandi Pickard, Ryan Rotundo, and the rest of the leadership team for bringing on Rob Snow as the new Executive Director of the Commission and for their tireless work setting up our Hill Day and helping lay the foundation for this wonderful organization.

“Also grateful for these forward-thinking organizations SHRM, National Down Syndrome Society, and Voya Financial for co-founding the Commission together to address employment challenges and lack of opportunities to people with disabilities. As well as the National Fragile X Foundation for the honor of being their board member and representative on the Commission.

“Let’s keep fighting for change and being the voice of the disabled community!”

Learn more about the CEO Commission’s policy initiatives here: https://ceocommission.org/policy

about
Author Hilary Rosselot

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!

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Advocacy | Stand Up for Fragile X
Learn more about the NFXF’s Advocacy work by visiting our Advocacy webpage.

  • Older man fist bumping little boy with text "DOD Grant Awarded for a FXTAS Trial"

DOD grant awarded for a FXTAS trial

PureTech Health has been awarded a DOD grant of up to $11.4 million from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).