NFXF Board of Directors

Meet the people behind 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.

Also see on this page: Ambassadors | Self-Advocate Advisors to the Board

NFXF board of directors
Laurie Bridges, BOD Member

Laurie Bridges

President

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!”

Kara Frech, BOD member

Kara Frech

Vice President

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.”

Evan Davis, BOD Vice President

Jordan Crotty

Treasurer

Jordan and his wife, Liz, are the devoted parents of Cora, who has a deletion of the FMR1 gene, as well as their two other children, Blair and Reid.  Upon discovering Cora’s diagnosis in 2021, Jordan and Liz embarked on a journey of extensive research, frequently finding invaluable resources and support through the National Fragile X Foundation (NFXF) website.  With a robust professional background spanning nearly two decades, Jordan has specialized in Risk Management, primarily within the financial sector.  Jordan hopes to use this experience to serve the best interest of the NFXF.

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.

Evan Davis, BOD Vice President

Jacquelyn Coleman

Board Member

Jacquelyn and her husband, Paul, are the proud parents of two children, Maya and Paul III, both of whom were diagnosed with Fragile X syndrome. When her son was diagnosed in 2002, Jacquelyn sought as much information as she could find. One of the first resources she discovered was the book Children with Fragile X Syndrome: A Parents’ Guide by NFXF team member, Jayne Dixon Weber. It is a book that she still cherishes today. After learning more about Fragile X premutation conditions at her first NFXF International Fragile X Conference in San Antonio, Jacquelyn decided to get tested to determine her number of CCG repeats. She was surprised when she found out that she, too, has the full mutation Fragile X syndrome.

Jacquelyn and her family became involved with the NFXF Houston Chapter in 2013, and since then have participated in many local events and fundraisers, and attended NFXF Advocacy Day and International Fragile X Conferences. Jacquelyn has worked as a workers’ compensation administrative law judge for the state of Texas for the past 15 years. She is motivated by the desire to raise awareness in the community at large about Fragile X syndrome, to help underrepresented people gain better access to clinical trials, and to help self-advocates have a better future.

Joe Garera, BOD Member and CSN Liaison

Peggy Flanigan

Board Member

Peggy Flanigan lives in Beaverton, Oregon. Along with her five sisters, she has been aware of their Fragile X carrier status since 1989. She and her husband, Mike, have an adult daughter who is a mosaic, as well as several nieces and nephews with varying levels of mutation. She and her family have received invaluable support from the National Fragile X Foundation this entire time, and she is excited to give back.  She hopes to encourage participation in all avenues of activities in the Fragile X world, especially regarding awareness of the special needs of carriers and the potential for Fragile X tremor/ataxia syndrome (FXTAS).

Peggy has a master’s in nursing and retired in 2020 after 42 years of pediatric clinical nursing. She attended her first International Fragile X Conference virtually in 2020, participated in her first Advocacy Day in 2022, and has been involved in legislative hearings related to prenatal testing in Oregon. She constantly keeps updated on and is inspired by the latest in Fragile X research, and she is excited about the potential for a cure and for improved treatment. Peggy considers it an amazing honor to serve on the NFXF board of directors.

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 “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!”

Denny Haugen, BOD Member

Susan Howell

Board Member

Denny Haugen, BOD Member

Tamaro S. Hudson, Ph.D.

Board Member

Tamaro Hudson is an associate professor of pharmacology at Howard University College of Medicine. Dr. Hudson is a molecular pharmacologist with expertise in cancer, natural products, molecular biology, and pharmacogenetics. He has integrated his research focus by identifying novel signature biomarkers with the evaluation of new chemopreventive cancer strategies, which have been evaluated in Phase I and Phase II clinical trials. His expertise in cancer-related processes, specifically mitochondrial health, which is critical in neurodegenerative diseases, has allowed him to transfer these skills to Fragile X-associated tremor/ataxia syndrome (FXTAS). Currently, his lab assesses the biological activity of natural compounds on mitochondrial health in FXTAS. His research interests continue to expand in order to build collaborations across broad disciplines.

Dr. Hudson served on the board of the Maryland Fragile X Resource Group. His personal experience with this syndrome and current research interest in FXTAS led Dr. Hudson to join the advisory committee for the International Fragile X Premutation Registry.

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.”

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, DC, 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 to 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.”

Shari Silver, BOD member

David Tillman

Board Member

David Tillman is the proud parent of three wonderful human beings — Miles, an 8-year-old living with Fragile X syndrome, and his two adult sibling advocates, Mary Haven and Teagan. Miles and David enjoy playing musical instruments, singing show tunes as loudly as possible, and hiking nearby Raven Rock State Park.

David is the chair of the Department of Public Health at Campbell University, and his professional career is focused on health equity and innovation. He has served on the Executive Council for Disability and Health with the American Public Health Association and has published and presented on a variety of topics related to inclusiveness and equity in health care.

In the Fall of 2020, David created the Xtraordinary Miles Campaign and ran a marathon completely barefoot to raise awareness of Fragile X syndrome and raise funds for NFXF. In Fall 2022, he repeated the effort and ran an ultramarathon.  Prior to joining the NFXF Board of Directors, David was already involved with the foundation, participating in Advocacy Day, attending the International Fragile X Conference, serving as a consumer reviewer representing NFXF for the Congressionally-Directed Medical Research Program, and as a parent advocate during the Patient-Focused Drug Development Meeting with the FDA.

“The National Fragile X Foundation immediately connected me to a supportive community from the first moments of learning of Miles’ diagnosis … joining the board is an opportunity for me to contribute to strengthening this community as we share stories, share resources, share research, and work toward a better future for folks affected by Fragile X.”

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 healthcare conditions. She has a son with Fragile X syndrome and developed a Fragile X practice and research portfolio. She trains and coaches physicians, nurses, and other healthcare 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.

Ambassadors

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.

Emily Mack, BOD President

Carolyn Tomberlin

Ambassador

Carolyn is the proud mother of two amazing Fragile X young men who are her “True North.” As such, the NFXF became the “Compass” by which to navigate living with Fragile X since the first day of diagnosis in 2000. In return, Carolyn has worked to support the community through fundraising and serving on the NFXF board for five years. She is excited to continue that support as Ambassador where she will leverage her professional acumen as an Intellectual Capital Manager & Licensing executive to help the foundation open new doors and evolve new strategies for an even stronger, brighter future.

Self-Advocate Advisors to the Board

Dillon Kelley, Ambassador for NFXF Advocacy

Dillon Kelley

Advocacy Ambassador and Advisor to the NFXF Board of Directors

Dillon Kelley (fm, 31) lives in Southern Maryland with his family.  He has joyfully participated in every Advocacy Day and is passionate about the inner workings of the government and public policy. He interned for the Committee on House Administration under Congressman Gregg Harper as well as for Rep. Steny Hoyer and the Capitol Visitor’s Center.

Dillon works at the Real Food Studio as the bar manager. He enjoys spending time with family and friends.  He loves watching NFL and college football (Go Saints!)

Carly Dolan

Advisor to the NFXF Board of Directors (Virginia)

Kelley Dunphy

Advisor to the NFXF Board of Directors (Massachusetts)

Summer Villalta

Advisor to the NFXF Board of Directors (Colorado)