Meet Our Team
Linda Sorensen, Executive Director
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 an 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 Dixon Weber, Director of Education & Support Services
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.
Dan Whiting, Director of Communications & Government Relations
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 U.S. 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.
Director, Community Engagement
Missy has been an active volunteer since 2010 and accepted the Central Regional Leader role in 2013 and joined NFXF staff in November 2018. 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 Fragile X and has presented at past International Fragile X Conferences. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF Team, Missy had worked as a nurse for more than 20 years
Robby Miller, Director of Clinic & International Relations
Robby has spent over 40 years helping children with special needs, and 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.
Amie Milunovich, FORWARD National Coordinator
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.
Community Support Network Regional Leaders
Paula Fasciano, Northeast Region
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 Garera, Mid-Atlantic Region
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. Joe currently serves on the NFXF Board of Directors as the CSN Liaison.
Matt Rhodes, Southeast Region
Matt and his wife Beth formed the local support group for Alabama in 2007. They have organized fundraisers and 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, Alabama.
Jen Barber, West Region
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 her hometown in southeast Minnesota to visit her parents and family members.
Diane Southard, Southwest Region
Diane served as the president of the Fragile X Resource Center of Missouri from 2009 until 2017. 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.
Jay Souder, President
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 learning of his condition, 12 members of our extended family were also tested and similarly diagnosed. 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 strongly believe that the future remains bright for Alec and our family. I recently retired from Charles Schwab after a 40 year career in the Financial Services industry, and I am now proud to serve as the NFXF Board President.
Larry Krantz, Vice President
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!
Rajat Sarup, Treasurer
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.
Emily Mack, Secretary
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.
Brian Silver, Past President
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.
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.
Bio coming soon.
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, allowing me to interact with with hundreds of children, adults, and families with FX over the past 30 years. As our knowledge of genetics has greatly expanded in the past decade, we have entered a new era of scientific discovery that will bring many exciting insights and medical advances to families living with FX and many other genetic disorders. The NFXF has always been a professional anchor and a wonderful resource for the FX community. I’ve been fortunate to serve for many years on the NFXF’s Scientific and Clinical Advisory Committee (SCAC) and now on the Foundation’s Board of Directors. In my day job, I am the Associate Director and a senior research investigator at Geisinger’s Autism & Developmental Medicine Institute in Lewisburg, Pennsylvania.
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.
Joe Garera, CSN Board Representative
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 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.
Carolyn Krull Tomberlin is a mother of two Fragile X young men, Theodor and Lars in Petaluma, CA. NFXF has been central to their lives since their diagnosis in 2000. Carolyn has been serving on the NFXF Board since 2015, focusing primarily on founding and facilitate the NFXF Biobank™. Her goal is it to continue leveraging her business 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