Meet Our Team

Meet the people behind the the scenes at the National Fragile X Foundation. While we are here to serve all those living with Fragile X, we couldn’t do what we do without the support of the entire Fragile X community. Together, we can make a difference. If you have any questions or need to reach anyone, we’d love to hear from you.

Linda Sorensen, Executive Director

Linda Sorensen

Conference Director, former Executive Director

Linda has been a member of the NFXF team since 2004, and served as executive director from 2004 to 2022. She has over 25 years of experience in non-profit programs, operations management, board and volunteer development. She earned a bachelor’s degree in Psychology and a masters 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.

Hilary Rosselot headshot

Hilary Rosselot

Acting Executive Director, Research Facilitation Lead

Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s in psychology, an MBA, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!

Kristin Bogart headshot

Kristin Bogart

Senior Director, Development and Communications

Kristin joined the NFXF team in 2019. She has over 20 years of experience in fundraising and non-profit management, event planning, and board and volunteer development. She earned a bachelor’s degree in economics and a master’s in public administration. Kristin loves spending time with her two teenage sons and in the company of friends, and enjoys gardening, running, and hiking in the Santa Cruz mountains.

Jayne Dixon Weber, Director of Education

Jayne Dixon Weber

Director, Community Education

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

Missy Zolecki, Director of Community Empowerment

Missy Zolecki

Director, Community Empowerment

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 Clinic and International Relations

Robby Miller

Director, 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.

Kim Toman, Operations Manager

Kim Toman

Operations Manager

Kim has been a member of the NFXF team since July 2021. She brings extensive experience in accounting and office management. Her background also includes volunteering and supporting many fundraising events and activities benefiting the NFXF. She has three adult children and enjoys traveling and exploring new places with her family.

Amy Milunovich, FORWARD National Coordinator

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 bachelor’s degree in family and consumer science and is a SOCRA↗ certified clinical research professional (CCRP). She enjoys Bikram yoga, painting, cooking, and spending time with family and friends.

Board of Directors

Emily Mack, BOD President

Emily Mack

President

Emily and her husband are the proud parents to a blended family of five kids. They were introduced to Fragile X in February 2011 after their son was diagnosed at 2 years old. They were fortunate to work with Dr. Craig Erickson at the Cincinnati Fragile X clinic and have participated in several research studies.

Emily has 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. She’s driven by the desire to ensure that the NFXF continues to play an integral role in the lives of families, educating communities, and facilitating research.

Evan Davis, BOD Vice President

Evan Davis

Vice President

Evan and his wife Alexis and have four wonderful children: Sophie, Cece, Michael, and Lila. Cece was diagnosed with Fragile X syndrome 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 Fragile X on the Today Show during Awareness Month. Evan uses his 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 Fragile X, and ultimately to help find a cure as soon as possible.

Rajat Sarup, BOD Treasurer

Rajat Sarup

Treasurer

Rajat is with State Street Global Advisors as an equity analyst in investment management responsible for utilities and telecom sector research. He brings over 16 years of experience in the financial services industry with GE. Rajat has a master’s degree and a chartered financial analyst (CFA) designation given by the CFA Institute.

His family is committed to bringing their experience with large corporations to serve the National Fragile X Foundation toward achieving its goals of providing support, promoting awareness, and working toward a cure for Fragile X.

Abigail Gaunt, BOD Member

Abigail Gaunt

Secretary

Abigail joined the Fragile X world when her 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, Abigail is the assistant dean of students at Tulane Law School. She also has experience as a director of student conduct, a litigation associate, and a law clerk in the U.S. District Court for the Southern District of New York and the U.S. Court of Appeals for the Fifth Circuit. She is also the outreach coordinator for the New Orleans Special Olympics.

Laurie Bridges, BOD Member

Laurie Bridges

Board Member

Laurie and her husband, Will, are the proud parents of Caroline (full mutation) and Clark. Laurie has worked as an occupational therapist since 1999 and currently works in the Humble Independent School District near Houston. Not long after her daughter was diagnosed with Fragile X Syndrome, Will and Laurie began serving Fragile X families in the Houston area by forming an NFXF Community Support Group in 2011. She has attended five NFXF International Fragile X Conferences and was co-chair of the host committee for the 2016 conference in San Antonio.

Since the beginning of their Fragile X journey, the Bridges are thankful for the National Fragile X Foundation and how it supports families, promotes education and awareness, and puts a priority on research: “We keep moving forward and taking the next step. We are thankful for our Fragile X family because we are not alone!”

Anthony Fasciano, BOD member

Anthony Fasciano

Board Member

Anthony and his wife, Paula, and are the proud parents of two awesome young men: Matthew (aka Matty Fash), 24, and Benjamin (aka Benji), 18, both of whom live with Fragile X syndrome.

“These two boys never cease to amaze us. They have overcome so much, have accomplished so much, and still have so much to do. The NFXF has been a very instrumental part of helping us get them to where they are today. We have been affiliated with the NFXF since Matty was 2 when he was first diagnosed with FXS. My wife Paula has been the family pillar of strength with the Foundation, serving in various capacities over the last 17 years. One of the things I have enjoyed most is having the privilege of meeting so many wonderful Fragile X families along the way. The whole community is full of very special people.”

Anthony has over 30 years of financial management experience in both the public and private sectors and looks forward to serving the NFXF on the board.

If anyone has any questions about being a Fragile X parent, Anthony says, “Just ask. I am always willing to help and share what we have learned.”

Kara Frech, BOD member

Kara Frech

Board Member

Kara and her husband, Steve, are the proud parents of two teenage boys, Andrew and Jason, both diagnosed with Fragile X syndrome in 2007. Upon diagnosis, Kara immersed myself in all things Fragile X to learn how to help her boys lead successful, fulfilling lives. The NFXF was and is her go-to source for this.

In 2012, Kara co-founded the Southeast Pennsylvania Fragile X Community Support Network group and continues to lead the group by organizing educational conferences, social events, and X Strides walks for local families.

Kara’s passion for helping others lead successful lives with Fragile X along with her skills acquired as a former management consultant and currently as a stay-at-home parent contribute to supporting the NFXF’s mission while serving on the board. “I am proud to serve as a board member for the foundation to further the mission of the NFXF to provide unwavering support while relentlessly pursuing a cure.”

Joe Garera, BOD Member and CSN Liaison

Joe Garera

Board Member, CSN Board Representative

Joe and his wife Leslie are the proud parents of their son Nick who in 1995, at 22 months old, was diagnosed with Fragile X syndrome. Becoming educated became their passion and the NFXF gave them the direction and material they needed to get their journey off on the right foot.

In 1997 Joe started the now Tri-State Fragile X Alliance. Hosting events has been his focus to bring Fragile X to the region, and he serves as the MidAtlantic Community Support Network regional leader. As the CSN liaison to the board of directors, Joe’s “humbled and honored with this opportunity to represent the members of the CSN, a pillar of the NFXF.”

Joe is a retired firefighter, is active in their church, and works as a safety director for a construction company.

Denny Haugen, BOD Member

Denny Haugen

Board Member

Denny and his wife, Marcia, are proud parents of Angela, 40, and Aaron, 38. Aaron was diagnosed with Fragile X syndrome when he was 10 years old, thanks to a very observant elementary school teacher. Aaron’s diagnosis was a real blessing as his education could have been a disaster! He had a wonderful functional education that helped him graduate from high school in Kansas City, Missouri.

After moving to Waverly, Iowa, in 2003, Aaron was able to live by himself with agency help and has a job in dining services at Wartburg College. Aaron also helps manage the Wartburg College football team, which is the true love of his life! There is a documentary called, “Not So Fragile” that shares much of Aaron’s journey.

“I am so excited to be a member of the board of directors for the NFXF! I’m hoping to learn and share a lot — both in experience as a parent of a Fragile X son and in wisdom gained from my fundraising career of 14 years. I look forward to continuing to learn more about Fragile X, especially in research for the full-mutation Fragile X adult!”

Reymundo Lazaro, MD, BOD Member

Reymundo Lozano, MD

Board Member

Dr. Lozano, an assistant professor in the Department of Genetics and Genomic Sciences, Department of Psychiatry, and Department of Pediatrics at the Icahn School of Medicine at Mount Sinai in New York, is an adult and pediatric clinical-geneticist with research training in neurodevelopmental and neurodegenerative disorders. He is the director of the Mt. Sinai Fragile X Spectrum Disorder Clinic and as a collaborator on clinical trials in Fragile X syndrome, Dr. Lozano is committed to finding new pharmacological treatments. “It is my great pleasure to work with the Fragile X syndrome and Fragile X-associated tremor/ataxia syndrome scientific and medical communities, patients, and families. Together we utilize current and innovative treatment strategies to ameliorate patients’ medical challenges.”

Jeff Seifert, BOD member

Jed Seifert

Board Member

Jed is the proud younger brother of Darren who was diagnosed with Fragile X when he was 12 years old and has always been his inspiration. He is the co-founder of Stakes Manufacturing, a print-on-demand apparel company out of Cleveland where they are passionate about inclusion and currently employ a number of individuals with different disabilities.

Jed has been working with the disabled community since he started coaching Special Olympics as a teenager. His mom, Rita, has been an active member of NFXF for decades and got him involved advocating in 2012. He is also a board member for SEEC, an organization dedicated to helping individuals with disabilities attain meaningful employment opportunities and independent living in the DC metropolitan area.

Jed and his wife, Niki, live in Bethesda, Maryland, and are proud parents of two wonderful boys Darwin, 6, and Everett, 4. He is truly honored to be the first sibling to serve on the board and use his business experience to create new opportunities for NFXF.

Rebecca Shaffer, MD, BOD Member

Rebecca Shaffer, MD

Board Member

Dr. Shaffer is an associate professor of pediatrics at Cincinnati Children’s Hospital and she specializes in both clinical care and research with Fragile X syndrome and autism spectrum disorder. She is also the director of psychological services for the Cincinnati Fragile X Center↗. Her research is primarily focused on emotion dysregulation in both FXS and ASD. She enjoys helping individuals find ways to calm their bodies and minds and fully engage in the world around them. She also enjoys helping caregivers find ways to best support them in this process. “It is truly a pleasure to work with the Fragile X population and their families.”

Shari Silver, BOD member

Shari Silver

Board Member

Attending her first Advocacy Day in Washington, D.C., back in 2009 served as Shari’s introduction to everything the NFXF has to offer, including an avenue by which she could be a more active participant in helping her son Justin, 19, have the best life possible after his diagnosis of Fragile X Syndrome in 2006. Since then, Shari, her husband, Brian, and their daughter, Hailey, 22, have been active members. Over the years, she has attended numerous Advocacy Days, NFXF International Fragile X Conferences, and served as the co-leader of the NFXF Community Support Network of Greater NYC for two years.

In 2010, the Silver family created the Fly With Me Fund to assist other families living with Fragile X syndrome and related disorders gain access to appropriate care and to support Fragile X-related research. In addition to the NFXF, Shari is involved at the UC Davis MIND Institute, becoming a member of their National Council of Visitors↗ in 2019.

The NFXF has been vital in giving Shari the ability to parent and help the world understand her son. “It has also given me a tremendous extended family. I am honored to join the board so I may play some role in ensuring families to come will have the support of the NFXF.”

Vicki Wilkins, MD, BOD Member

Vicki Wilkins, MD

Board Member

Dr. Wilkins is a pediatric hospitalist who specializes in provider-family communication, experience of care, and care for children with complex health care conditions. She has a son with Fragile X syndrome and has therefore developed a Fragile X practice and research portfolio. She trains and coaches physicians, nurses, and other health care providers in engaging in difficult conversations, conflict resolution, disclosure and resolution of adverse events, and shared decision making. She is the medical director of experience of care at Primary Children’s Hospital in Salt Lake City, Utah.

Jay Souder, Ambassador

Jay Souder

Ambassador

Jay and his wife, Anne, are the proud parents of Alec who was diagnosed with Fragile X syndrome in 1995 when he was 4 years old. After learning of his condition, 12 members of their 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.”

Jay recently retired from Charles Schwab after a 40-year career in the financial services industry. He proudly served on the NFXF board for six years, including the last two as board president. He is now proud to serve as the first Ambassador.

Scientific and Clinical Advisory Committee

Len Abbeduto, PhD

UC Davis MIND Institute↗
Sacramento, California

Gary Bassell, PhD

Elizabeth Berry-Kravis, MD, PhD

Marcia Braden, PhD

Private Psychology Practice↗
Colorado Springs, Colorado

Jonathan Cohen, MD

Craig Erickson, MD

Brenda Finucane, MS, LGC

Autism & Developmental Medicine Institute↗
Geisinger Health System
Lewisburg, Pennsylvania

Ed Goldson, MD

Children’s Hospital Colorado
Aurora, Colorado

Randi J. Hagerman, MD

UC Davis MIND Institute↗
Sacramento, California

Deborah Hall, MD, PhD

Gail Harris-Schmidt, PhD

Saint Xavier University↗
Chicago, Illinois

David Hessl, PhD

UC Davis MIND Institute↗
Sacramento, California

Heather Hipp, MD

Kimberly Huber

Vanessa Johnson, PhD, RN

Walter Kaufmann, MD

Frank Kooy, PhD

University of Antwerp↗
Antwerp, Belgium

Daman Kumari, PhD

Ave Lachiewicz, MD

Duke University Medical Center↗
Durham, North Carolina

Maureen Leehey, MD

Andrew Levitas, MD

Psychiatrist

Sean McBride

Rowan University↗
Stratford, New Jersey

Allyn McConkie-Rosell, PhD, CGC

David Nelson, PhD

Feliciano Ramos, PhD, MD

University of Zaragoza↗
Zaragoza, Spain

Karen Riley, PhD

University of Denver↗
Denver, Colorado

Susan M. Rivera, PhD

UC Davis MIND Institute↗
Sacramento, California

Sarah “Mouse” Scharfenaker, MA, CCC-SLP

Developmental FX↗
Denver, Colorado

Gail Spiridigliozzi, PhD

Duke University Medical Center↗
Durham, North Carolina

Tracy Stackhouse, MA, OTR

Developmental FX↗
Denver, Colorado

Vicki Sudhalter, PhD

Institute for Basic Research↗
Staten Island, New York

Nicole Tartaglia, MS, MD

University of Colorado↗
Aurora, Colorado

Flora Tassone, PhD

Peter K. Todd, MD, PhD

Jeremy Turk, MD

St. George’s, University of London
London, England

Karen Usdin, PhD

Rob Willemsen, PhD

Erasumus University↗
Rotterdam, Netherlands

Emeritus Directors

Randi Hagerman, Emeritus Director

Randi Hagerman

Developmental pediatrician Dr. Randi Hagerman co-founded the National Fragile X Foundation in 1984 and has helped guide the foundation ever since. In 2009, after more than 100 board meetings, Randi agreed that it was time to step aside and let others bring their expertise to the board.

There is no aspect of the NFXF that Randi has not helped shape. Her strength as both a clinician and as a researcher has informed the NFXF mission and strategic plan. She and her husband, Dr. Paul Hagerman, generously support the NFXF mission. While Randi is no longer a board member, she is active on the NFXF Scientific & Clinical Advisory Committee (see above) and within the Fragile X Clinical & Research Consortium where she represents the UC Davis Medical Center’s MIND Institute as medical director of the Fragile X Clinic.

Randi continues to be a sought-after speaker and her work has expanded from Fragile X syndrome to all Fragile X-associated disorders. Randi is continually on the go as an international spokesperson for Fragile X. Fortunately, she’s only an hour away from the NFXF headquarters by car and seconds away by phone when we need to call upon her for her guidance, advice, and wisdom.

Mr. and Mrs. Hollin

Harris Hollin

Harris enlisted during the Korean War and served as an Army combat officer earning a Bronze Star. He owned Lemmon Pharmaceuticals, now part of TEVA Pharmaceuticals. He is a Fragile X grandfather and founded the Conquer Fragile X Research Foundation, now part of NFXF, which supported Fragile X research in many countries across Europe and Asia. (Pictured: Mr. and Mrs. Hollin.)

Gene Koelbel

As a leader of the Sewall Child Development Center in Denver, Colorado↗, Gene Koelbel was instrumental in the early success of the National Fragile X Foundation through her support of and collaboration with Dr. Randi Hagerman in the early 1980s. Along with her husband Walt, Gene provided crucial financial support for early Fragile X syndrome screening.

She served on the NFXF board of directors throughout the 1980s and 1990s. Her and her husband’s financial support of the NFXF in 1999 was crucial to its successful transition from a very small and poorly staffed organization to the much larger and effective organization of today. Gene also stepped forward to provide major financial support of the NFXF’s 25th anniversary campaign in 2009.