Linda has been a member of the NFXF team since 2004. She has over 25 years of experience in non-profit programs, operations management, board and volunteer development. She earned a BA degree in Psychology and a MS degree in Adult Education and Organizational Development. She loves the company of her family and friends and enjoys golf, along with entertaining, traveling and reading great books.
Jayne has been a member of the NFXF team since 2007. She has two children, an adult son with Fragile X syndrome and a daughter. Jayne authored the book “Transitioning ‘Special’ Children into Elementary School” and was the editor for the book “Children with Fragile X Syndrome: A Parents’ Guide.” Jayne likes to read, enjoys photography and goes for a walk every day.
Paula Lipford has more than 15 years of experience in volunteer and community engagement, specializing in connecting a volunteer’s passion to action. She has served in leadership roles with several health and education-focused organizations. Recently, Paula relocated to the Twin Cities area and enjoys exploring the area, spending time with her family, reading, writing and walking briskly with her newly adopted dog, Molly.
Robby has spent over 40 years helping children with special needs, their families and the professionals who work with them. Robby is particularly interested in how families learn about, access and receive meaningful services from competent professionals, organizations and institutions. This interest led to his co-founding the FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.
Dan has been a member of the NFXF team since 2017. He has over 20 years of experience in public policy and communications, including time on staff of a US Senator for 11 years, in the Bush Administration as Chief of Staff at an agency and as a senior strategist for communication initiatives across the DOD. He loves spending time with his family and friends and dreams of either being an artisan woodworker or comedy writer.
Holly’s impact as an NFXF Team Member since 2010 has helped the Community Support Network (formerly LINKS) grow to the success it is today. She has two children, a son and a daughter, both with Fragile X syndrome. Holly is a founder of the Central Illinois Fragile X CSN group and is currently co-leader of the group. Holly has been a speaker at several conferences.
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 studies in computer network technology. He loves comic books and dancing.
Amie joined the NFXF in 2015. She has eight years of experience coordinating clinical research trials. Amie was a Research Assistant and Research Coordinator for numerous Clinical Trials at several programs. Amie holds a BA degree in Family and Consumer Science and is a SOCRA Certified Clinical Research Professional. She enjoys Bikram Yoga, painting, cooking and spending time with family and friends.
Kimberly has over 23 years in not-for-profit development at an array of organizations, both as a volunteer and a paid professional. Kimberly has worn many hats since her son’s Fragile X diagnosis in 2004. 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. In 2015, Kimberly joined her profession and her passion when she became part of the NFXF team as the Development Manager. She enjoys time with her family, running and sand between her toes.
Paula began serving as the leader of the New Jersey Fragile X Community Support Group in 2014. As the co-leader, she has worked in conjunction with the NY group to organize biennial educational conferences since 2007. Paula and her husband Anthony have two teenage sons, Matthew and Benjamin, living with FXS. Paula also has an adult brother with FXS and an adult sister with FXS, autism and seizure disorder. Paula lives in New Jersey.
Joe began serving FX families in the Cincinnati community in the late 90s by forming a support group at Cincinnati’s Children’s Hospital, which later became the Greater Cincinnati Fragile X CSN. Joe has expanded the reach of the NFXF through the Tri-State Fragile X Alliance, serving Kentucky, Indiana and central/southern Ohio. He was a charter member of the LINKS Advisory Council and Strategic Planning Team. Joe organizes fundraisers and awareness opportunities to help support local Fragile X efforts. Joe and his wife, Leslie, have a young adult son, Nick, living with FXS.
He currently serves on the NFXF Board of Directors as the CSN Liaison.
Jennifer is a Registered Nurse and mother of three children; her two oldest children live with Fragile X Syndrome. Since their diagnosis in 2010 she has fiercely advocated for her children and embraces opportunities to educate fellow community members. She has been a co-leader for the Central California Fragile X Chapter since 2014 and accepted the West Regional Leader position in 2018. As a Chapter leader she has helped organize numerous successful fundraisers and has presented to medical professionals, school educators, students, and at local colleges about Fragile X. Jennifer loves to travel, especially to Southeast Minnesota to visit her parents and family members residing in her hometown.
In 2007 Matt and his wife Beth formed the local support group for Alabama. They have organized fundraisers, social and educational events in and around the Birmingham area to support and raise awareness for FX. Matt has presented at local events, state conferences and International Fragile X Conferences. Matt participates in NFXF Advocacy Days and has also advocated on the state level. His family has been co-featured in local articles to promote awareness about FX. Matt and Beth have two children, Samantha and James, both with FXS. They reside in Hoover, AL.
From 2009 until 2017, Diane served as the president of the Fragile X Resource Center of Missouri. She speaks with local schools, universities and businesses about Fragile X, educating others on acceptance and support. In 2006, Diane graduated from the Missouri Partners in Policymaking Program. She also holds a BS from Truman State University. Diane is married to Scott and is the mother of eight children. Her sons, Evan and Joshua, and daughters, Gigi and Ava, live with FXS. Her family resides in the St. Louis area.
Missy is a co-leader of the Greater Chicago Resource Group. She has been an active volunteer since 2010 and accepted the Central Regional Leader role in 2013. Missy has organized several fundraisers and educational workshops while working closely with the Fragile X Clinic at Rush University over the years. She speaks to educators, professionals and service organizations about FX and has presented at past International Fragile X Conferences. Missy is the mother of three children. Her eldest son, Matt, lives with FXS. Missy has worked as an emergency room nurse for more than two years.
The first days and weeks of knowing our son Justin’s Fragile X diagnosis, in 2006 when he had just turned 5, were dark. With this diagnosis, we learned my father-in-law, who had just passed, suffered with FXTAS and other family members were dealing with FXPOI. Early on, we made the decision that we could not sit back and wait for research to happen. Things brightened as my wife Shari and I had the fortune to be guided by the best minds associated with FXS. In the fall of 2007, we established the Justin Silver Fly With Me Fund to help families like ours get the same type of relief Fragile X clinic medical care provides. I am honored to serve as the President of the Board of Directors and will continue to do everything I can to help drive the NFXF mission and vision forward.
I am the proud father of an 18-year-old son, Tyler, who was diagnosed with fragile X syndrome at the age of three. He has as kind a heart as anyone I know. I also have a 20-year-old, Sasha, now in college, whose life has been affected by Fragile X. I am honored to have joined the NFXF board, and will work tirelessly to help the NFXF raise awareness, provide support to those affected, and assist in finding treatments and a cure. It is a mission of love for me!
I am with State Street Global Advisors as an Equity Analyst in Investment Management responsible for Utilities and Telecom sector research. I bring over 16 years of experience in the financial services industry with GE. I have an MBA and the Chartered Financial Analyst designation. My family is committed to bringing our experience with large corporations to serve the Foundation towards achieving its goals of providing support, promoting awareness and working towards a cure for Fragile X.
My husband and I are the proud parents to our blended family of five kids. We were introduced to Fragile X in February 2011 after our son was diagnosed at 2 years old. We are fortunate to work with Dr. Craig Erickson at the Cincinnati FX clinic and have participated in several research studies.
I have worked in corporate wellness as an exercise physiologist and wellness coach for the past 18 years at a large hospital system, on-site worksite wellness programs and in private practice. I’m driven by the desire to ensure that the NFXF continues to play an integral role in the lives of families, educating our communities, and facilitating research.
My wife, Anne, and I are the proud parents of Alec who was diagnosed with FXS in 1995 when he was 4 years old. After Alec’s diagnosis, 12 members of our family were also diagnosed with a variety of FX conditions. Our journey has allowed us to both laugh and (occasionally) cry but has always simply been accepted as our path and one that we readily embrace. And we believe that the future remains bright. I spend most of my time consulting for Charles Schwab on corporate business development strategies and as a keynote speaker to our clients, on a host of financial topics.
My wife, Alexis and I have four wonderful children: Sophie, Cece, Michael and Lila. Cece was diagnosed with FXS in 2009. We are avid participants in the Fragile X community, from NFXF Advocacy Day, to fundraising, to local events, to FX Clinic visits at Kennedy Krieger, to an annual promotion of FX on the Today Show during Awareness Month. I will use my experience as a business owner, branding and marketing professional, and NPO board member to raise awareness and understanding, create opportunities for more research and funding, contribute to improving the lives of those living with FX, and ultimately to help find a cure as soon as possible.
Dr. Patricia Evans is a Professor of Neurology, Pediatrics and Psychiatry at University of Texas Southwestern Medical School(UTSW).She is chair of the UTSW Neurodevelopmental Disabilities(NDD)residency and clinical program. She received her MD from Texas Tech University in 1983; residencies in Pediatrics (1986; Texas Tech University School of Medicine), Adult and Pediatric Neurology(1992-1995;UTSW)and an NIH-supported fellowship in Cognitive Development (1995-1996; Johns Hopkins School of Medicine).She carries a PhD in research psychology.She has contributed invited chapters on the clinical and genetic aspects of Autism Spectrum Disorders (Rosenberg’s Molecular and Genetic Basis of Neurological and Psychiatric Disease, 2014); and authored a text on ASD (Evans P, Morris, M, Clinical Guide to Autistic Spectrum Disorders for Primary Care Practitioners, 2010). She has also authored chapters on neuroethics, served as chairperson of the Section on Ethics for the American Academy of Neurology (AAN); and added two chapters specific to pediatric ethical concerns in neuroethics (Evans, in M Williams, ed, Practical Ethics in Clinical Neurology; 2012). Dr. Evans lives in the Dallas area with her family. She feels great gratitude at having had the privilege to work with special needs families for nearly 40 years.
My husband Anthony and I are proud parents of two sons (Matthew, 19 & Benjamin, 13) with FXS. I also have a brother with FXS and sister with FXS, autism and seizure disorder. Matthew was the first diagnosed with FXS in our family, at age 2 in 1999. We live in Marlboro, NJ.
Since 2004, I have been CSN co-leader of the NJ Fragile X Community Support Group. I’m also the Northeast Region Leader for the NFXF CSN groups. I’m honored to give my time to volunteer to help grow this Foundation which has been my lifeline since 1999.
I work for Vanbridge LLC, a boutique insurance brokerage firm, focused on private equity firms and their portfolio companies.
As a genetic counselor and researcher, the focus of my work has been on genetic causes of developmental disabilities, and which led me to contact with hundreds of children, adults and families with FX over the past 30 years. The NFXF has always been a professional anchor and a wonderful resource for the FX community. I’ve been fortunate to serve on the NFXF’s SCAC, and now on the Foundation’s Board of Directors as a representative of the FXCRC. I currently serve as the Associate Director and Senior Research Investigator at Geisinger Health System’s Autism & Developmental Medicine Institute in Lewisburg, PA.
I joined the Fragile X world when my son, Mack, was diagnosed with Fragile X Syndrome in July 2014, a few months before his second birthday. Today he is verbal, attends a mainstream preschool, and he just learned to ride a bike and swim—all accomplishments that seemed out of reach when he was first diagnosed. He is always the happiest kid in the room.
Currently, I am the Assistant Dean of Students at Tulane Law School. I also have experience as a Director of Student Conduct, a litigation associate, a law clerk in the U.S. District Court for the Southern District of New York and the United States Court of Appeals for the Fifth Circuit. I am also Outreach Coordinator for New Orleans Special Olympics.
My wife Leslie and I are proud parents of our son Nick. In 1995 at 22 months old Nick was diagnosed with FXS. Becoming educated became our passion and the NFXF gave us the direction and material we needed to get our journey off on the right foot.
In 1997 I started the now Tri-State Fragile X Alliance. Hosting events has been my focus to bring Fragile X to the region. I’m the MidAtlantic CSN Regional Leader. As the CSN Liaison to the Board of Directors, I’m humbled and honored with this opportunity to represent the members of the CSN, a pillar of the NFXF.
I’m a retired firefighter, active in our church and work as a safety director for a construction company.
My wife Caryn and I are the proud parents of two wonderful children. Our son Corey is 19 years old and has Fragile X syndrome. Our daughter Brette is a typically developing 14-year-old, and a fantastic role model, advocate and sister to Corey. I have been fortunate to enjoy a rewarding career in consumer goods marketing in St. Louis, MO, where I was born and raised. I am honored to be part of the NFXF Board and look forward to leveraging my extensive marketing experience and energy to further the NFXF’s mission around awareness, community, research and the ultimate goal of finding a cure.
My wife Tina and I were blessed with our son Hayden in 2005, and in 2007 discovered he had Fragile X syndrome. After the initial shock and a few months of unanswered questions, my wife contacted the NFXF, who put us in contact with the Fragile X Association Michigan. After moving to San Antonio, we started the Fragile X Alliance of Texas in April 2010. We’re proud to have grown FXAT from its roots in San Antonio to include Houston as one of our chapters. Now I am honored and humbled to have been asked to sit on the NFXF Board of Directors.
My wife, Frandi Mars and I are the proud parents of three beautiful children: Arielle, 22; Ryan, 15, and Sydney, 12. Arielle and Ryan both have Fragile X syndrome (FXS); Sydney is unaffected. My wife and I are so grateful for the information and network provided through the Fragile X Foundation and the connections we have made are priceless. We cannot change Ryan’s genes but we can modify the gene expression. I have worked in association and non-profit management for the 28 years and am excited to share my experiences with the board and team furthering the truly wonderful mission of the NFXF.
I have been involved in research of Fragile X for my entire career as a scientist. My early work helped to identify the unique aspects of the inheritance of the FXS prior to the discovery of the FMR1 gene. Since then, I have focused on studying the Fragile X premutation, which will hopefully lead to prevention and intervention. I have had the opportunity to help form the FXCRC in collaboration with the NFXF and the CDC. I have enjoyed working with a great team of clinicians and researchers, all dedicated to finding ways to better care for families with Fragile X.
Our family was devastated when our grandson Nathan, was diagnosed with FXS. My wife and I were unflinchingly determined to educate ourselves. We have chosen to help anytime, anywhere and anyhow.
I am a retired corporate executive, currently teaching MBA students at a local university. I volunteer in my community and church. I hope to utilize my marketing, strategic planning and leadership strengths to help the FX community.
Grandparents can have a positive impact if they can travel alongside their adult children as they navigate the journey of Fragile X.
As mother of two Fragile X young men, the NFXF has been central to our lives since the day we received our first diagnosis in 2000. Our boys became my “True North”, while the NFXF and everything it offers has become our “Compass.” I am honored to be serving with such a talented and passionate board. I am particularly thrilled to be leveraging my professional acumen as an Intellectual Property Manager -Licensing Executive to help the Foundation open new doors and evolve new strategies for an even stronger, brighter future.
Len Abbeduto, PhD
UC Davis MIND Institute
Gary Bassell, PhD
Elizabeth Berry-Kravis, MD, PhD
RUSH University Medical Center
Marcia Braden, PhD
Private Psychology Practice
Colorado Springs, Colorado
Jonathan Cohen, MD
Center for Developmental Disability
Fragile X Alliance Clinic
Craig Erickson, MD
Cincinnati Children’s Hospital
Brenda Finucane, MS, LGC
Autism & Dev Med Institute
Geisinger Health System
Ed Goldson, MD
Children’s Hospital Colorado
Randi J. Hagerman, MD
UC Davis MIND Institute
Deborah Hall, MD, PhD
Rush University Medical Center
Gail Harris-Schmidt, PhD
Saint Xavier University
David Hessl, PhD
UC Davis MIND Institute
Heather Hipp, MD
Emory University School of Medicine
Vanessa Johnson, PhD, RN
Nova Southeastern University
Fort Lauderdale, Florida
Walter Kaufman, MD
Greenwood Genetic Center
Greenwood, South Carolina
Frank Kooy, PhD
University of Antwerp
Daman Kumari, PhD
National Institutes of Health
Ave Lachiewicz, MD
Duke University Medical Center
Durham, North Carolina
Maureen Leehey, MD
University of Colorado Hospital
Aurora, CO 80045
Andrew Levitas, MD
University of Medicine and Dentistry
Stratford, New Jersey
Translational Neuroscience Program
Translational Research Laboratories
Allyn McConkie-Rosell, PhD, CGC
Duke University Children’s Hospital
Durham, North Carolina
David Nelson, PhD
Baylor College of Medicine
Feliciano Ramos, PhD, MD
University of Zaragoza
Karen Riley, PhD
University of Denver
Susan M. Rivera, PhD
UC Davis MIND Institute
Sarah “Mouse” Scharfenaker, MA, CCC-SLP
Gail Spiridigliozzi, PhD
Duke University Medical Center
Durham, North Carolina
Tracy Stackhouse, MA, OTR
Vicki Sudhalter, PhD
Institute for Basic Research
Staten Island, New York
Nicole Tartaglia, MS, MD
University of Colorado
Flora Tassone, PhD
UC Davis School of Medicine
Jeremy Turk, MD
St. George’s Hospital Medical School
Karen Usdin, PhD
National Institutes of Health
Rob Willemsen, PhD