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 | Chief Operating Officer

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.

Jeffrey Cohen | Director of 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 of 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 Education & Support Services

Jayne Dixon Weber
Jayne has been a member of the NFXF team since 2007 and currently serves as the director of education & 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 start 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.

David Salomon | Communications Manager

David Salomon
David joined the NFXF in October 2007. He works with the communications team 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.

Kimberly Powell | Fundraising Events Manager

Kimberly Powell
Kimberly has worn many hats with the NFXF starting in 2004 with her son’s Fragile X diagnosis. Kimberly immediately joined the local support group in Georgia, organized fundraisers and awareness events and served as the local co-chair for the 2006 International Fragile X Conference. In 2009, she served on the Board of Directors and became the Community Support Network Leader for Greater Atlanta Fragile X. Kimberly has been an active member of the Fragile X Community and has attended 10 out of 12 National Fragile X Advocacy Days in Washington, DC. She has nearly 20 years’ experience in not-for-profit development at an array of organizations varying in size and budget, from grass-roots to educational institutions to national foundations, as both a paid professional and a volunteer. Kimberly is thrilled to merge her profession and her passion and is excited to make a difference in the Fragile X community. She has been skydiving four times and enjoys time with family, running and the sand between her toes.

Eric Welin | Web Developer

Eric Welin
Eric joined the NFXF’s team in early 2011 to overhaul the website, fragilex.org. He has more than 15 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.