Our 2026 NFXF Awardees

Hilary Rosselot, Executive Director
Hilary Rosselot

06 mins read

The 2026 NFXF Awards were given out at the 20th NFXF International Fragile X Conference. Learn more about each award — Community Support Network, Research, Clinical, Hagerman, the Al and Melissa Blount Lifetime Achievement, and the Professional Lifetime Achievement awards  — and each of our awardees.

Community Support Network Awardee

The Community Support Network awards honor significant contributions to awareness and support of the Fragile X community.

Marcella Almeida, Rhode Island

Marcella and her husband are parents to four incredible children – three of whom have Fragile X syndrome. They received a diagnosis in 2022, and dove right in. The Almeida family pledged to bring awareness to Fragile X, including bringing awareness and support to their local community and participating in NFXF events like the 19th NFXF International Fragile X Conference and X Strides. The Little Rhody Warriors are quite the force to be reckoned with!

Thank you, Marcella, for raising awareness and supporting the Fragile X community!

NFXF Research Awardees

The NFXF Research Award honors outstanding contributions to our understanding of Fragile X.

University of South Carolina Fragile X Collaborative

The newest NIH-funded Fragile X Center of Excellence, led by Drs. Jane Roberts, Jessica Klusek, and Abigail Hogan, and team, the University of South Carolina Fragile X Collaborative is dedicated to addressing some of the gaps in Fragile X research, including a focus on females with Fragile X syndrome and the premutation, across the lifespan. We are grateful not only for their leadership, but for their continued advocacy of these topics at the community level all the way up to the federal level.

Yet another force to be reckoned with! Thank you Drs. Roberts, Klusek, and Hogan (not pictured), for your outstanding contributions to our understanding of Fragile X!

NFXF Clinical Awardee

The NFXF Clinical Awards honor dedicated clinical service to families in the Fragile X community.

Deborah Sara Barbouth, MD

As director of the South Florida Fragile X Clinic, Dr. Barbouth continues to serve the Fragile X community with excellence, beloved by all she meets. Dr. Barbouth has a particular focus on integrative health, supporting families with a wholistic approach.
We are particularly inspired and excited about her and teams efforts to open a women’s clinic to serve all those living with FX across the conditions & lifespan.

Thank you Dr. Barbouth for your passionate, dedicated clinical service to families in the Fragile X community!

Hagerman Awardee

The Hagerman Award honors groundbreaking research on Fragile X-associated conditions and disorders.

Dr. Flora Tassone

Dr. Tassone critical molecular and biomarker work helping to advance what we know and hope to know about the premutation, particularly FXTAS. Dr. Tassone has always championing biobanking efforts, which support advancing the field and ensuring there are options for research. In addition to all her research, she has been one of the champions and of the global Fragile X premutation community- organizing the ever-popular, ever-productive International Premutation Conference.

Thank you. Dr. Tassone, for not only your impressive research on Fragile X-associated conditions, but for continuing to inspire the collaborative spirit that so benefits the Fragile X community.  

Al and Melissa Blount Lifetime Achievement Awardees

The Al and Melissa Blount Lifetime Achievement Award honors sustained and generous support of the NFXF and the Fragile X community.

Joey Christoff

As a forever NFXF champion and former Board President, Joey dug into the Fragile X community and never stopped.

Since 2017, Joey Christoff has hosted an annual multi-day event he calls “Fishing for a Cure” at his home in Hilton Head, South Carolina.

Joey started the tradition in honor of his son, Mitchell, who has Fragile X syndrome, and his wife and mother-in-law who are carriers at risk of Fragile X-associated disorders.

From fun events like Fishing with a Cure to sponsoring billboards educating people while they are driving about Fragile X (safely, of course!), Joey is a true champion of the Fragile X community. Thank you!

Thank you, Joey, for your sustained and generous support of the NFXF and the Fragile X community!

Two Special Honorees

Laurie Bridges and Kara Frech

Laurie & Kara are currently our Board President and Vice Presidents. They have served for two terms in their role, an admirable tenure that has guided and inspired the NFXF to be what it is today.

Laurie has led the National Fragile X Foundation with unwavering positivity, a gift for building meaningful connections, and a remarkable ability to help each of us ‘find our people.’ Her leadership has strengthened not only our organization, but also the sense of community and belonging that makes the Fragile X family so special.”

“Kara’s positive Philly energy, commitment to good governance, and talent for bringing new people into the fold have made a lasting impact on the National Fragile X Foundation. She has helped ensure that our board remains strong, engaged, and prepared for the future.”

Thank you, Laurie and Kara, for all you have done for the Fragile X community!

 

About the Author

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 several 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.