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.
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!
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 playing tennis, running, and hiking in the Santa Cruz mountains on the California coast.
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
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.
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.
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.
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.
Jen has been volunteering with the NFXF since 2010, after her two oldest children were diagnosed with Fragile X syndrome. After their diagnosis, growing their family came to an abrupt stop while they navigated Fragile X syndrome and what this meant for their family moving forward. In 2014 Jennifer was a surrogate and was able to see the workings of the PGD/IVF process. In 2016 they decided to use PGD/IVF to grow their family. Jen joined the NFXF team in 2014 as a Chapter and Regional Leader and has since accepted roles as Conference Coordinator (2020) and, most recently, Development Assistant (2022).
Jaleesa joined the NFXF in 2023. She has experience marketing to niche audiences with brands that are person-centered. She understands the power of advocacy and its impact, especially in underserved communities. Such as people living with disabilities. She volunteers with a non-profit the Georgia Champion Project. A non-profit organization that offers free/reduced-cost boxing lessons to at-risk youth. Jaleesa is a second-generation military veteran and a first-generation college graduate. She is a veteran of the United States Airforce Reserves. And achieved a B.S. in Integrative Studies from Clayton State University. Her son Tiger has Fragile X Syndrome. And he is the reason she can see the magnificence in simple things. In her free time, Jaleesa enjoys writing her children’s books, biking on the Atlanta beltline, binging a good Netflix show, and exploring content related to African American Studies.
Board of Directors
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 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.”
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.”
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.
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 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, 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 fifteen 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.
Peggy Flanigan lives in Beaverton, Oregon. Along with her 5 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 FX 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 degree 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.
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 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!”
Tamaro Hudson, Ph.D.
Tamaro S. Hudson, Ph.D., M.P.H., 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 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 Lozano, MD
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.”
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
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.”
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.”
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 showtunes 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 Fall 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 towards a better future for folks affected by Fragile X.”
Vicki Wilkins, MD
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.
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.
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
Gary Bassell, PhD
Elizabeth Berry-Kravis, MD, PhD
Marcia Braden, PhD
Jonathan Cohen, MD
Craig Erickson, MD
Brenda Finucane, MS, LGC
Ed Goldson, MD
Children’s Hospital Colorado
Randi J. Hagerman, MD
Deborah Hall, MD, PhD
Gail Harris-Schmidt, PhD
David Hessl, PhD
Heather Hipp, MD
Vanessa Johnson, PhD, RN
Walter Kaufmann, MD
Frank Kooy, PhD
Daman Kumari, PhD
Ave Lachiewicz, MD
Maureen Leehey, MD
Andrew Levitas, MD
Allyn McConkie-Rosell, PhD, CGC
David Nelson, PhD
Feliciano Ramos, PhD, MD
Karen Riley, PhD
Susan M. Rivera, PhD
Sarah “Mouse” Scharfenaker, MA, CCC-SLP
Gail Spiridigliozzi, PhD
Tracy Stackhouse, MA, OTR
Vicki Sudhalter, PhD
Nicole Tartaglia, MS, MD
Flora Tassone, PhD
Peter K. Todd, MD, PhD
Karen Usdin, PhD
Rob Willemsen, PhD
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.
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.)
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.