NFXF Team Retreat 2012
Interim Executive Director
has degrees in business administration and law. He has been associated with the Foundation since 1996. First as a member of the board (1996-2010), as board president (’97-’03), as chair of the Public Policy Committee (’03-’10), as Director of Government Affairs and Advocacy (2011-2013) and as interim executive direction (2013-present). He first joined the board (with his wife Arlene) after attending the 4th International Conference in Albuquerque in ’94 within months of the diagnosis of FXS in their then 5 year old twins. “We wanted to give something back to the organization that helped us regain our life after the diagnosis”. His present responsibilities include managing the federal affairs agenda of the foundation and its annual Washington, DC Fragile X Advocacy Day. He has 2 children living with FXS who are well on their way to successfully transitioning into an independent and productive adulthood.
Robert M. Miller
has been the executive director of the National Fragile X Foundation since 1999. He has over 40 years experience as a teacher and administrator in the fields of early intervention, special education, mental health and nonprofit/human service administration. His work has included programs for children from abuse and neglect backgrounds as well as work in economically disadvantaged areas as part of the Federal Head Start program. Robert was also instrumental in forming a national network of Fragile X clinics and the formation of a national collaboration formed to improve the lives of all adults with intellectual disabilities. In addition to his activities at the national level, Robert has worked with a number of groups and organizations throughout the world regarding the establishment of international parent support networks and clinics for Fragile X.
Linda Sorensen, MS
has been a staff member of the NFXF since 2004 and currently serves as associate director. She has over fifteen years of experience in non-profit programs, development, board and volunteer development and operations management. She is a contributing editor to the Foundation Quarterly journal. She loves the company of family and friends and enjoys entertaining, hiking and reading great books.
Sharon Kidd, MPH, PhD
FXCRC National Coordinator
obtained both her Master of Public Health in epidemiology/biostatistics and her PhD in epidemiology from UC Berkeley. Sharon is a perinatal and pediatric epidemiologist studying the patterns of health problems during pregnancy and childhood. She 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 co-authored numerous publications, taught epidemiology courses, and reviews manuscripts for peer-reviewed journals. She has been working at the NFXF since November 2011 and is grateful to be able to continue working on promising research on children and young adults with developmental disabilities. Her major project is to coordinate the data collection efforts of the FXCRC clinics nationwide. She enjoys travel, cable TV, and the triumphs and tragedies of her daughter’s middle school exploits.
Program & Administrative Assistant
has been program and administrative assistant since 2005. He has previously worked in publishing and continues to write about music and the fine arts for a Northern California newspaper. The challenges offered by the always growing National Fragile X Foundation are a great source of personal and professional satisfaction.
joined the National Fragile X Foundation in October 2007. He assists in logistical planning for the Fragile X Clinical and Research Consortium, assists with the foundation’s social media activities, and implements communications on the website, e-newsletters and other announcements. David is a graduate in Asian American Studies at UC Davis, and has completed his studies in computer network technology. He loves comic books.
Jayne Dixon Weber
Coordinator of Support Services
has been the coordinator of support services for the National Fragile X Foundation since 2007. She has two children—one an adult son with fragile X syndrome, the other a typical daughter studying to be an occupational therapist. In addition to assisting on the NFXF’s “Adolescent & Adult Project,” Jayne authored the book Transitioning ‘Special’ Children into Elementary School
and is the editor for the book, Children with Fragile X Syndrome.
LINKS Program Coordinator
started out at the LINKS program assistant for the National Fragile X Foundation in 2010 and became the LINKS program coordinator in the fall of 2012. She has two children, a son and a daughter, with fragile X syndrome. In 2006 she founded The Central Illinois Fragile X Resource Group to bring families together and raise awareness 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.
Assistant Shipping Clerk
has been working as the Assistant Shipping Clerk at the NFXF
since 2005. When not helping fill orders and prepare mailings, Sam enjoys baseball, rock ‘n’ roll and spending time with his family.
Writer and Editor
and his firm, Bridge Communications & Consulting
, has been producing much of the communications materials for the NFXF since 2004. He serves as editor of the Foundation Quarterly
journal, produces the Annual Fund, Awareness Day and other direct mail materials, and also oversees production of special topics and FXCRC brochures. Andrew had an early career as a special education teacher before becoming a newspaper and magazine editor, then spent a decade as communications director with an ad agency. He founded his firm in 2000.
joined the National Fragile X Foundation’s team in early 2011 to overhaul the website, www.fragilex.org. He has over 10 years of experience in web development. He now serves as the foundation’s web developer and oversees the social media content. He has one son with fragile X syndrome. In 2010 he, along with his wife Melissa, formed the Fragile X LINKS Group of Eastern Massachusetts to help connect families in the region.
joined the the NXFX 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 with the Foundation and the people she meets in the process. She is married with two daughters and treasures time with family and friends.