National Fragile X Foundation Team

Linda Sorensen,
Acting 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 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 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.

Paula Lipford

Paula Lipford,
Volunteer Program Director

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 Miller,
Director of Clinic Relations

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.

Karen Race Photography

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 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-Usrey-Roos

Holly Usrey-Roos,
Volunteer Program Manager

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 Salomon,
Communications Manager

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 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.

Kimberly Powell,
Development Manager

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.

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 is also the CSN Liaison to the NFXF Board of Directors, where she represents the CSN and sits on the Development Committee. 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

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.

Laureen Majeski,
West Region

Laureen has been the President of the Fragile X Association of Michigan for the past 14 years. They work closely with the Fragile X Clinic at the University of Michigan. Laureen has volunteered for the NFXF as a committee member, presenter at conferences, and participant in NFXF Advocacy Days. Laureen was the local conference chair for the International Fragile X Conference in Detroit. She has a BA in Telecommunications from Michigan State University and worked in Hollywood for major film and television studios. She is the mother of three grown children with FXS and autism and resides in Michigan.

Michelle-ODell

Michelle O'Dell,
Northwest Region

Michelle has been a co-leader for the Fragile X Association of Washington State for the past three years. Michelle co-founded the Highline Special Needs PTA in 2012, serving the special needs community within her school district. She served two years as President, Treasurer and currently chairs the Family & Community Engagement position for the PTA. She has attended NFXF Advocacy Day events and International Fragile X Conferences. Michelle and her husband, Jeff, have one son, Nathan, who lives with FXS. Her father, Bruce, lived with FXTAS.

Matt Rhodes,
Southeast Region

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.

Diane Southard,
Southwest Region

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 Zolecki,
Central Region

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.

Board of Directors

Brian Silver,
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.

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.

jay souder

Jay Souder,
Development Chair

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.

Evan-Davis

Evan Davis

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.

Paula Fasciano
CSN Board Representative

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.

Brenda-Finucane

Brenda Finucane
FXCRC Board Representative

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.

Mark Gershenson

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.

Jimi-Grande

Jimi Grande

I work in Washington, DC in Government Affairs. Most of my career has revolved around working for and with elected officials and not-for-profits. My amazing wife Buffy and I have two children. Our daughter Georgia is a typical 8 year old girl. We’re blessed with Jimmy Jr., who is a non-verbal boy yet capable of communicating his love for others. The Foundation has been a critical resource for our family since the day we received our diagnosis. Buffy coordinates our local group, and if you ever need help reach out to us. My first email led to great things, and yours will, too.

Howard Pollock

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.

Rick Reynolds

My wife, Kathy, and I have two sons with Fragile X – Doug and Jimmy.  As they are now adults, we not only have many years of experience but face new journeys and challenges raising our sons with Fragile X.

Prior to my involvement with the National Fragile X Foundation, I have been on other non-profit boards and have worked closely with Emory University.  This experience provides valuable background and insights for working with the Fragile X community.

On a professional level, I am co-founder and CEO of Atlanta-based AskForensics.  We deliver global sales and account growth support to major corporations.

Stephanie-Sherman

Stephanie Sherman

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.

Carolyn-Tomberlin

Carolyn Tomberlin

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.

Donald Schalk

Donald Schalk

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.

Mike Makris

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.

Scientific and Clinical Advisory Committee

Len Abbeduto, PhD
UC Davis MIND Institute
Sacramento, California
Institutional Website

Liane Abrams, MS, CGC
National Fragile X Foundation
Walnut Creek, California
Institutional Website

Gary Bassell, PhD
Emory University
Atlanta, Georgia
Institutional Website

Elizabeth Berry-Kravis, MD, PhD
RUSH University Medical Center
Institutional Website

Marcia Braden, PhD
Private Psychology Practice
Colorado Springs, Colorado
Institutional Website

W. Ted Brown, MD, PhD,
Institute for Basic Research
Staten Island, New York
Institutional Website

Jonathan Cohen, MD
Center for Developmental Disability
Melbourne, Australia
Institutional Website

Kim Cornish, PhD
Monash University
Melbourne, Australia
Institutional Website

Brenda Finucane, MS, CGC
Autism and Developmental Medicine
Institute of Geisinger Health System
Lewisburg, Pennsylvania
Institutional Website

Louise Gane, MS
UC Davis MIND Institute
Sacramento, California
Institutional Website

Ed Goldson, MD
Children’s Hospital Colorado
Denver, Colorado
Institutional Website

Randi J. Hagerman, MD
UC Davis MIND Institute
Sacramento, California
Institutional Website

Deborah Hall, MD, PhD
Rush University Medical Center
Chicago, Illinois
Institutional Website

Gail Harris-Schmidt, PhD
Saint Xavier University
Chicago, Illinois
Institutional Website

David Hessl, PhD
UC Davis MIND Institute
Sacramento, California
Institutional Website

Andrew Hoogeveen, PhD
Erasmus Medical Center
Rotterdam, Netherlands
Institutional Website

Vanessa Johnson, PhD, MS, RN-BC
University of Oklahoma
Tulsa, Oklahoma
Institutional Website

Walter Kaufman, MD
Greenwood Genetic Center
Greenwood, South Carolina
Institutional Website

Frank Kooy, PhD
University of Antwerp
Antwerp, Belgium
Institutional Website

Ave Lachiewicz, MD
Duke University Medical Center
Durham, North Carolina
Institutional Website

Andrew Levitas, MD
University of Medicine and Dentistry
Stratford, New Jersey
Institutional Website

Allyn McConkie-Rosell, PhD, CGC
Duke University Children’s Hospital
Durham, North Carolina
Institutional Website

David Nelson, PhD
Baylor College of Medicine
Houston, Texas
Institutional Website

Lawrence Nelson, MD
National Institutes of Health
Bethesda, Maryland
Institutional Website

Christopher Pearson, PhD
The Hospital for Sick Children
Toronto, Canada
Institutional Website

Feliciano Ramos, PhD, MD
University of Zaragoza
Zaragoza, Spain
Institutional Website

Karen Riley, PhD
University of Denver
Denver, Colorado
Institutional Website

Susan M. Rivera, PhD
UC Davis MIND Institute
Sacramento, California
Institutional Website

Sarah “Mouse” Scharfenaker, MA, CCC-SLP
Developmental FX
Denver, Colorado
Institutional Website

Stephanie Sherman, PhD
Emory University School of Medicine
Atlanta, Georgia
Institutional Website

Gail Spiridigliozzi, PhD
Duke University Medical Center
Durham, North Carolina
Institutional Website

Tracy Stackhouse, MA, OTR
Developmental FX
Denver, Colorado
Institutional Website

Vicki Sudhalter, PhD
Institute for Basic Research
Staten Island, New York
Institutional Website

Flora Tassone, PhD
UC Davis School of Medicine
Davis, California
Institutional Website

Jeremy Turk, MD
St. George’s Hospital Medical School
London, England
Institutional Website

Karen Usdin, PhD
National Institutes of Health
Bethesda, Maryland
Institutional Website

Stephen Warren, PhD, FACMG
Emory University School of Medicine
Atlanta, Georgia
Institutional Website

Corinne Welt, MD
Massachusetts General Hospital
Cambridge, Massachusetts
Institutional Website

Rob Willemsen, PhD
Erasumus University
Rotterdam, Netherlands
Institutional Website