Board of Directors

Personal Statements From the NFXF Board of Directors

Brian Silver
New York

In most cases, families do not go to find the world of Fragile X but rather, it comes to them. This is how it is for my family. The first days and weeks of knowing our son Justin’s 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. Things did begin and continue to brighten as my wife Shari and I have the fortune to be guided by and speak with the best minds associated with Fragile X syndrome. Early on, as we, our daughter Hailey included, began to attack and cope with this life, we made the decision that we could not sit back and wait for research to happen. We decided to be proactive so we could say we did everything we could to help. We shared this thought with Drs Randi and Paul Hagerman and Louise Gane during our summer 2007 visit to the MIND Institute. They sent us home with a road map for Justin and a mission to raise money to purchase some much needed equipment for research.

In the fall of 2007, we raised enough money to buy the equipment AND establish the Fly With Me Fund (FWMF). Initially, the FWMF was an effort to help families in need by subsidizing travel expenses to the MIND Institute. Life was much better for us after visits to the Boston clinic, the MIND Institute and the clinic at Rush University Hospital and we wanted to help other families obtain the same type of relief appropriate medical care provides. Today, the fund has grown to include all the clinics through the National Fragile X Foundation. If interested in learning more please come check it out at or on the NFXF website.

I am honored to serve on the Board of Directors and will continue to do everything I can to help drive the NFXF mission and vision forward.

Larry Krantz
New York

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!

Mike Makris

My wife Tina and I were blessed with our son Hayden in March 2005. As time went on, we noticed Hayden wasn’t quite meeting “typical” developmental goals, and we saw him falling behind some of the children in his play group. Following “Mother’s intuition,” we began getting him tested. Finally, on October 22, 2007, we were hit with the news that Hayden has Fragile X syndrome. After the initial shock and a few months of unanswered questions, my wife contacted the NFXF. They put us in contact with members of the Fragile X Association of Michigan, which is where we started our long and rewarding friendships with so many others in the FX community. FXAM also helped us establish a wonderful relationship with the NFXF. I attended Advocacy Day for the first time in 2008. With sadness yet excitement for a new challenge, we moved to San Antonio, Texas in 2010. Along with my wife and many families we met in Texas, we formed the Fragile X Alliance of Texas in April 2010. I am proud to say that we’ve grown FXAT from its roots in San Antonio to also include Houston as one of our chapters. I am honored and humbled to have been asked to sit on the NFXF Board of Directors. I was recently looking back at my first blog posting in 2008 as I wanted to try and chronicle our journey with Fragile X, and the title of that post seems so perfect now: “Moving Forward.”

Emily Mack

My husband, Greg, and I are the proud parents to our own version of the “Brady Bunch” with five kids, ranging from a college freshman to a kindergartener. Our family was introduced into the world of Fragile X in February of 2012 after our son, Gavin, was diagnosed at two and a half years old. This came after months of doctor’s appointments, testing and interventional services to determine the cause of his developmental delays. Additional family testing uncovered that our oldest son is a FX carrier. We have an amazing network of FXS families in the central Ohio area with a passion for fundraising to support research to find treatments and ultimately a cure. We have been fortunate to work with Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center. In lieu of wedding gifts, we directed donations to the Fragile X Clinic at CCHMC and have participated in research with Dr. Erickson.

As an exercise physiologist and wellness coach, I have worked in corporate wellness for the past 16 years. Focusing my passion for exercise and my competitive nature, Greg and I completed the Marine Corp Marathon in October 2014 as part of a Fragile X fundraising team. I am honored to be a member of the NFXF Board of Directors and excited to collaborate with families and clinicians within the Fragile X community to move the mission and vision of the NFXF forward. I am ready to meet this challenge with passion and dedication to ensure that the NFXF continues to play an integral role in the lives of families, awareness within our communities and making significant progress in research.

Development Chair
Jay Souder

My wife, Anne, and I are the proud parents of Alec who was diagnosed with Fragile X syndrome in 1995 when he was 4 years old. Subsequent to Alec’s diagnosis, 12 members of our extended family have been identified as carriers or directly affected. As a result, we are a family that is dedicated to helping others that share our circumstances, challenges and blessings. 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 have worked in the financial services industry for almost 40 years, the last 20 with Charles Schwab. I spend most of my time consulting on Corporate business development strategies and as a keynote speaker to our clients, on a host of financial topics.

Anne works for a Corporate Wellness group and is the backbone of our family. She has been a local (Arizona) advocate and contact for other Fragile X families, a consistent fund-raiser and a sounding board for ideas related to potential support programs and resources – for over 20 years!

I am honored to be a member of the NFXF Board of Directors. I proudly serve as the Chair of our Development Committee and as a member of our Board’s Executive Committee.

Evan Davis

I am honored to be a member of the Board of Directors. My wife, Alexis and I have four wonderful children: Sophie, Cece, Michael, and Lila. Cece was diagnosed with Fragile X syndrome in 2009. I also have two nephews who are living with Fragile X. At the time of Cece’s diagnosis, we knew nothing about Fragile X—we had never heard of it. Realizing that we were completely in the dark about something that had such a profound impact on our family was a real wake up call. Since then we’ve increased our involvement in the cause and developed connections to many in the Fragile X community. We are regular participants at NFXF Advocacy Day, we engage in fund raising activities, we make a annual pilgrimage to New York to promote Fragile X on the Today Show during National Fragile X Awareness Month, we participate in Maryland Resource Group events, and we make regular visits with Cece to the Fragile X Clinic at the Kennedy Krieger Institute in Baltimore.

My experiences at NFXF Advocacy Day the past few years have really motivated me to do more. The stories, the support, the love, and the commitment of families traveling to Washington, DC from across the country to advocate for those impacted by Fragile X have been a significant inspiration to me. I‘m excited to join this talented group and use my past experience as a business owner, a branding and marketing professional, and a non-profit 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.

CSN Board Representative
Paula Fasciano
New Jersey

My husband Anthony and I are proud parents of two sons (Matthew, 17 and Benjamin, 11) with FXS. I also have an adult brother with FXS, and an adult sister with FXS, autism and seizure disorder. My older son Matthew was the first to be diagnosed in 1999 at the age of two. We live in Marlboro, New Jersey.

I have been the CSN leader of the New Jersey Fragile X Community Support Group since 2004 (and a co-leader since 2013). In October 2013, I was named Northeast Region Leader for the eight CSN groups in the northeast U.S. As a CSN leader, I’ve had the pleasure of working in conjunction with the NYC group in organizing and hosting successful regional educational conferences in 2007, 2009, 2011 and 2013. My husband and I have hosted newly diagnosed families in our home, and we’ve planned social events locally for parents to enjoy their time together.

From 2009-2012, I served as a member of the Marlboro Township Board of Education, which was the first time a parent with two children with special needs served on the Board. I work in NYC, as a property and casualty insurance broker for Vanbridge LLC, a boutique insurance brokerage firm, which specializes in private equity firms.

FXCRC Board Representative
Brenda Finucane, MS, LGC

As a genetic counselor and researcher, I have a primary goal of helping individuals and families adapt to the medical, psychological, and family implications of genetic diagnoses. The focus of my professional work has always been on genetic causes of developmental disabilities, and this naturally brought me into contact with hundreds of children, adults, and families with Fragile X over the past 30 years. The NFXF has always been a professional anchor and a wonderful resource for the Fragile X community. I’ve been fortunate to serve on the Foundation’s Scientific and Clinical Advisory Committee and now on its Board of Directors as a representative of the Fragile X Clinical and Research Consortium. As a Fragile X Clinic director, I have enjoyed long-term relationships with many families, watching their children grow and blossom into adulthood, as well as newly-diagnosed families who are just beginning their Fragile X journey.

Mark Gershenson

My wife Caryn I are the proud parents of two wonderful children. Our 18 year old son Corey was diagnosed with Fragile X syndrome at 19 months of age, after which we quickly began leveraging the educational resources and emotional support of the NFXF. After adjusting to this new reality and with the guidance of a genetic counselor our daughter Brette was born 4 years later. Brette is a typically developing 13 year old, and a fantastic role model, advocate and sister to Corey. I have been fortunate to enjoy a long and rewarding career in consumer goods marketing in St. Louis, MO, where I was born and raised. I am honored to join the NFXF Board of Directors, and look forward to leveraging my experience and energy to further the NFXF’s mission around awareness, community, research, and the ultimate goal of finding a cure.

Jimi Grande
Washington, DC

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. On May 26, 2001 I married the most amazing woman I have ever met. Buffy and I have two children. Our daughter Georgia is a typical 8 year old girl. She is a wonderful, thoughtful and kind 8 year old who has worked with us as a team to help raise her younger brother. Jimmy Jr., is 6 years old and has the full mutation. It’s been a blessing to see how our non-verbal boy is capable of communicating his love for others. It is because of Fragile X, that we have been blessed in ways we never could have imagined. The Foundation has been a critical resource for our family since the day we received our diagnosis. We not only found great materials to help us learn about Fragile X but we met some wonderful people who understood what we were going through and had a love for our son that only other Fragile X parents are capable of. Buffy coordinates the Northern Virginia Fragile X Families Links Group and we hosted our first Educational Conference in October of 2011. If you have a newly diagnosed child and don’t know where to begin, I encourage you to send an email and just say “Help, where do I begin”. I promise you will find help and you will begin a journey that leads to a richer more fulfilling life than you ever imagined. I remember sending that first email and was grateful for the response I received. My email is

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. Diagnosis day for us was devastating. We had never heard of FXS and were hungry for more information. We were shocked when Arielle’s results showed full mutation, but now understand through the work of the NFXF that girls typically can be less affected than boys. 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.

Our main source of intervention for Ryan to manage the symptoms of FXS is dietary intervention which has significantly reduced his anxiety, hyperactivity and behavioral issues. We cannot change his gene but we can modify the gene expression. In addition to diet, he continues to be in other traditional and holistic therapies as well as receiving special education services in school.

Professionally speaking for the last 28 years I have worked in association and non-profit management 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 (27 and 22), we not only have many years of experience but face new journeys and challenges raising our sons with Fragile X.

Having been involved with Emory University’s Fragile X research efforts and serving several terms on the board of Community Health Charities (at the state and national levels), I have experienced first-hand the passion and tremendous impact individuals have in the non-profit world when working toward specific goals and outcomes.

On a professional level, I am a co-founding partner and CEO of Atlanta-based AskForensics, which assists Fortune-ranked companies in winning and retaining multi-million dollar accounts worldwide. We have built a knowledgebase of account retention data from more than $11.7 billion dollars’ worth of contracts and proposals, over $4.3 billion of which profile at-risk accounts.

I look forward to actively contributing my non-profit, business, and personal experiences to the NFXF board and the overall Fragile X community.

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 Fragile X syndrome prior to the discovery of the FMR1 gene. Since that time, I have been involved in understanding why the premutation leads to ovarian dysfunction in women and neurologic problems in men, and less often in women. We aim to identify factors that trigger onset of symptoms in some, but not all carriers. Together with my colleagues, we have had the honor to work with hundreds of families who have been diagnosed with Fragile X and are very grateful for this experience. We think our research will help identify perturbed biological pathways and perhaps lead to new insights to prevention and intervention. I have had the opportunity to help form the Fragile X Clinical and Research Consortium in collaboration with the NFXF and the Centers for Disease Control and Prevention. 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. I hope to be able to bring scientific support to the Board and promote research, as I think we are on the horizon of finding new targeted therapeutic interventions.

Carolyn Tomberlin

The name Fragile X exploded into my family’s world on June 6, 2000 when our oldest son, Theodor was diagnosed at age 4. Within hours I found the NFXF on the internet and was talking to real human beings who were there to listen, support, and help me figure out which way was up. The information on the NFXF website and additional phone calls with their staff steeled me for my very first FX “fight”- namely convincing the boys’ father, educating local doctors and circumventing local laws just to get our youngest son, Lars, tested and finally diagnosed in December 2000, at 10 months. The NFXF had taught me the astounding importance of advocating for my FX boys in this “first fight”. It became evident that advocacy would be the new norm of life.

For me, advocating for my FX boys and their needs has become the “True North” of all my actions ever since 2000. As such, the NFXF has become my compass. The NFXF has directed us to powerful resources such as Dr. Randi Hagerman and her team at the UC Davis MIND in Sacramento; Tracy and Mouse at Developmental FX in Denver; the fire-hose of information and personal connections made at all the NFXF International Fragile X Conferences we’ve attended; among many other resources. Whether educating staffs who work with my kids; advocating changes in a classroom or to an IEP; developing a social group to support my boys; fighting lawyers in the courtroom to make sure my boys are given access to adequate services; in all instances I have been confident in what I was doing because I knew I was doing the right thing. I knew it was right because I have a True North (my boys) and I have a COMPASS (NFXF) to get me there.

With a career as an Intellectual Property Manager in the high tech aerospace industry, I work out of my home in Petaluma, California for the Corporate Development office of Rockwell Collins. Theodor, Lars, their step-dad, John, and I love our new little home town we adopted in 2012.

I am honored to be joining the Board of Directors of the NFXF. I envision many aspects of my personal experience and career as being helpful in further developing and setting strategies for the growth of the NFXF. I look forward to giving back to this organization and the people of our FX community!

Emeritus Directors

Randi Hagerman

Developmental Pediatrician Dr. Randi Hagerman co-founded the NFXF in 1984 and has helped guide it 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 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 Hollin
Over the years, Harris N. Hollin has consistently demonstrated dedication, enthusiasm and commitment to supporting a cure for Fragile X. He has personally and profoundly been touched by his grandson, Matthew, who is fully affected by Fragile X syndrome. His need to help Matthew and the thousands of other children and adults with Fragile X syndrome caused him to found Conquer Fragile X Foundation (CFXF), which over the years funded scientific research all over the world, facilitated information and resource sharing among scientists and supported collaborative work among the world’s premier research labs in order to advance the scientific body of knowledge about Fragile X, its causes and potential treatments. In 2007 CFXF merged with the National Fragile X Foundation.

Harris enlisted in the US Army and served in Korea as an assistant platoon leader. He returned as a First Lieutenant, having earned a Bronze Star. He graduated from the University of Pennsylvania on the G.I. Bill and has since been followed at Penn by his three sons and three of his grandsons. After several positions, of increasing importance, he became President of Revlon’s International Pharmaceutical group, USV.

Harris created a successful business career in the health care area, building a modest pharmaceutical company, Lemmon, into what is now the multi-billion dollar United States division of TEVA Pharmaceuticals. Harris has numerous public service endeavors to his credit, including his service as an Associate Trustee of the University of Pennsylvania, and a Director Emeritus of the Wistar Institute, Harris also served as an Advisory Board Member for the Center on Aging and Health and the Division of Geriatric Medicine and Gerontology at the Johns Hopkins University Medical Center, and as Vice Chair of the Pennsylvania Chamber of Commerce. He is the Founding Chairman of Israel Elwyn, a leading provider of services to the intellectually disabled, in Israel. In 2006, Harris was honored by his appointment by President Bush to the President’s Committee for People with Intellectual Disabilities. Harris and his lovely wife of 58 years, Sande, have three sons and eight grandchildren. They live in Florida.

Gene KoelbelAs 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 1980’s. 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 1980’s and 1990’s. 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.