National Fragile X Foundation Team

The strength of the team is each individual member.
The strength of each member is the team.

–Phil Jackson

Tony Ferlenda | Chief Executive Officer

Tony Ferlenda
As the Chief Executive Officer of the NFXF, Tony brings more than 20 years of nonprofit leadership experience, fundraising skills and operational knowledge to the Team. Prior to joining the NFXF, Tony was the CEO of the American Red Cross Biomedical Services of New York/Pennsylvania for 12 years. Over his career, Tony has held the position of CEO for the Sarcoma Foundation of America, Director of Development and Communications for Onondaga County Arc and Development Officer for Syracuse University. Tony has also served on several nonprofit boards. He holds a B.A. in Communication Studies from State University of New York and an M.A. in Public Administration from Syracuse University. Outside of his work and volunteer efforts, Tony enjoys running, playing tennis and spending time with his family.

Linda Sorensen, MS | Associate Director

Linda Sorensen
Linda has been a member of the NFXF team since 2004 and currently serves as the associate director. She has over twenty years of experience in non-profit programs, operations management, board and volunteer development. Linda holds degrees in Psychology and Organizational Development. She greatly enjoys working with the Fragile X community and the successes and challenges of helping lead the NFXF forward. Linda loves the company of family and friends and enjoys entertaining, hiking and reading great books.

Sharon Kidd, MPH, PhD | FXCRC National Coordinator

Sharon Kidd
Sharon obtained both her Master of Public Health in epidemiology/biostatistics and her PhD in epidemiology from UC Berkeley. She is a perinatal and pediatric epidemiologist studying the patterns of health problems during pregnancy and childhood. Sharon completed her dissertation in May 2010 on sleep and cortisol in preschool-aged children with autism compared to typically developing children. She has authored and coauthored numerous publications, taught epidemiology courses, and reviewed manuscripts for peer-reviewed journals. Sharon has been with the NFXF since November 2011, where she can continue her work on promising research on children and young adults with developmental disabilities. Her major project at the NFXF is coordinating the data collection efforts of the FXCRC clinics nationwide. Sharon enjoys travel, cable TV, and the triumphs and tragedies of her daughter’s high school exploits.

Jeffrey Cohen | Director Public Policy & Government Affairs

Jeffrey Cohen
Jeffrey has been associated with the NFXF since 1996. First as a member of the NXFX Board of Directors (1996-2010), then as the Board President (’97-’03), Chair of the Public Policy Committee (’03-’10), Interim Executive Director (2013-2014), and Director Public Policy & Government Affairs (2011-present). Jeffrey first joined the NFXF Board (with his wife Arlene) after attending the 4th International Conference in Albuquerque in ’94. The Conference took place a few months after he received the diagnosis that his then five-year-old twins had FXS. Jeffrey’s two children living with FXS are now well on their way to successfully transitioning into independent and productive adults. Jeffrey holds degrees in business administration and law.

Jayne Dixon Weber | Director of Support Services

Jayne Dixon Weber
Jayne has been a member of the NFXF team since 2007 and currently serves as the director of support services. She has two children—one, an adult son with fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting wtth the development of the NFXF’s “Adolescent and Adult Project,” Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.

Holly Usrey-Roos | Community Support Network Program Coordinator

Holly Usrey-Roos
Holly started was the LINKS program assistant for the National Fragile X Foundation in 2010 and became the LINKS program coordinator in the fall of 2012. In early 2014 the LINKS Support Network was rebranded as the Community Support Network (CSN). Holly has two children, a son and a daughter, with fragile X syndrome. In 2006 she founded the Central Illinois Fragile X CSN group to bring families together and raise awareness about Fragile X in the region. She currently acts as co-leader of the group. Holly has been a speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.” The last of these was made into a podcast for the NFXF.

Beth Walker | Director of Communications

Beth Walker
Beth joined the NFXF in January 2014 as the director of communications. She is responsible for all external and internal communication plans and marketing programs for the Foundation. A dedicated and enthusiastic team member, when Beth is not working on NFXF-related business, she enjoys spending time with her family, friends, and dog, Charlie Sailor.

Phil Campbell | Financial Coordinator

Phil Campbell
Phil has been the financial coordinator since 2014. He joined the NFXF in 2005 program and administrative assistant. Phil has worked in publishing and continues to write about music and fine arts for a Northern California newspaper. The challenges offered by the always-growing NFXF are a great source of personal and professional satisfaction to Phil.

David Salomon | Communications Coordinator

David Salomon
David joined the NFXF in October 2007. He works with the director of communications to coordinate the Foundation’s website, social media emails and other online communications. He helps put together the year’s strategic plan for communications. David is a graduate in Asian American Studies at UC Davis, and has completed his studies in computer network technology. He loves comic books and dancing.

Eric Welin | Web Developer

Eric Welin
Eric joined the NFXF’s team in early 2011 to overhaul the website, www.fragilex.org. He has more than 10 years experience in web development. Eric now serves as the Foundation’s web developer and assists with social media content. He has one son who has fragile X syndrome. In 2010 he, along with his wife Melissa, formed the Eastern Massachusetts Fragile X CSN group to help connect families in the region. He also enjoys playing basketball and running, both of which his son is now into.

Sam Jacob Harrigan | Assistant Shipping Clerk

Sam Jacob
Since 2005, Sam has worked as the assistant shipping clerk for the NFXF. When Sam is not helping to fill orders and prepare mail, he enjoys baseball, rock ‘n’ roll and spending time with his family.

Donna Hendren | Accountant

Donna Hendren
Donna joined the the NFXF team in June 2010 when she took over the bookkeeping responsibilities. After working in various accounting positions, she now works as an independent contractor making Mondays her day with the Foundation. She enjoys the many different aspects of her work at the NFXF along with the people she meets in the process. Donna is married with two daughters and treasures time with family and friends.

Jessica Liu | Research Assistant

Jessica Liu
Jessica joined the NFXF in August 2013 as the research assistant to the FXCRC national coordinator. Jessica serves to support the various activities of the Fragile X Clinical & Research Consortium and the Longitudinal Data Project, which collects data on children with fragile X syndrome. Jessica received her Master of Public Health degree with a concentration in Health Promotion and Behavioral Sciences from the University of Texas Health Science Center at Houston. She loves sports, especially baseball (Let’s go OAKLAND!), cooking up nutritious dishes for her family and friends, and a good laugh.

Kayleigh Lemon | Graphic Designer

Kayleigh Lemon
Kayleigh has been working with the NFXF since early 2014. She has a BFA with a concentration in Graphic Design from Eastern Michigan University and is a member of AIGA. When she isn’t designing for the NFXF, she enjoys reading, designing greeting cards, and cheering on her beloved Detroit Red Wings.

Cecilia Joulain | Office Assistant

Cecilia Joulain
Cecilia joined the NFXF in May 2014. After pursuing graduate studies at UC Irvine, she recently transitioned into the nonprofit world. Cecilia is currently an intern at a public radio station, where she is exploring her interest in storytelling. She enjoys mastering database software, learning about Bay Area history, and following hockey.