Board of Directors
Personal Statements From the NFXF Board of Directors
I’m thrilled and honored to be a member of the board of directors. My husband and I are the proud parents of two “tween-age” kids in Grand Blanc, Michigan. Our son has fragile X syndrome while his younger sister does not and is not a carrier. Being a board member has really brought me full-circle, as I vividly remember the day I called the foundation just after our son was diagnosed, looking for answers, direction and an ear. While I still need all of those things, I hope to help provide answers, direction and an ear for other families as a board member. With my background in television reporting, I’m also hoping to assist the foundation in its efforts to reach all Americans impacted by Fragile X and to helping pave the future with greater awareness, better treatments and, ultimately, a cure.
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 Justin Silver 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 www.flywithmefund.org 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.
I am married to Melissa and the proud father of two children, Colin (18) and Tatyana (14). Since Colin’s diagnosis at the age of 9 months, we have relied heavily on the foundation for information, advice and support, and I am honored for the privilege to serve as a board member of such a well-run and respected organization. I have been an active member of the Maryland Resource Group since its inception (treasurer since 2001) and am looking forward to serving the broader Fragile X community.
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.”
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.
CSN Board Representative
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.
My wife, Bonnie, and I are proud parents of four beautiful children: two sons, Jeff and Joey and, two daughters, Jenny and Julie. Our first-born son, Jeff, was diagnosed with fragile X syndrome one week prior to his first birthday. The early 1993 diagnosis was a “lucky stab in the dark.” At that time, little was known about the disorder and we struggled to find Fragile X-specific information, referral, intervention and support for the newly diagnosed. In turn, we sought a comprehensive resource network on Fragile X serving the medical community, affected families and disability groups. We ultimately embraced the National Fragile X Foundation—and they turned out to be a vital resource! Their collective wisdom, educational resources, support, commitment to research and effective advocacy have been an enormous help to our family and have positively impacted many other affected families. I am truly honored to now serve on the NFXF Board and look forward to more actively participating in an organization that is near and dear to my heart. Together, let’s find a cure!!
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 firstname.lastname@example.org
My wife, Joy, and I are the lucky parents of two amazing young boys. Our lives were forever changed when Tyler, our youngest son, was diagnosed with fragile X syndrome at 18 months. Diagnosis day came in early 2010 after an exhausting 12-month marathon of physician meetings, therapies, tests, diagnoses and an emotional roller coaster ride because of false negatives. Despite the rough road to diagnosis, we consider it a blessing to have learned about Tyler’s condition at his early age, because this has allowed us to capitalize on early intervention therapies. Since Tyler’s diagnosis, our family has benefited from the overwhelming support, experience and expertise of many parents, professionals, and physicians in the Fragile X community, which was primarily made possible through the existence and effectiveness of the National Fragile X Foundation. A testament to the experience and expertise of the Fragile X community and the effectiveness of the NFXF was made very evident when Joy’s dad was diagnosed with FXTAS, a condition he has suffered from throughout his life, within one month of Tyler’s diagnosis. This is extraordinary considering no one in our extended families had ever heard of Fragile X or FXTAS before Tyler’s diagnosis. I am extremely honored to be a part of the NFXF Board of Directors, and look forward to embracing these new responsibilities by working work with the board, foundation team, and others that are committed to the cause of changing the world by finding a cure for Fragile X! My wife and I are parents and advocates first, but both continue to work (Joy is a VP of sales & marketing for a human resources services company and I am a CFO for a technology company). We reside in Orange County, California, and are both excited about doing what we can to further the mission of the National Fragile X Foundation.
My wife, Anne, and I are the proud parents of Alec (21) who was diagnosed with fragile X syndrome in 1995 when he was 4 years old. Subsequent to Alec’s diagnosis no fewer than 8 other members of our extended family have received similar or related diagnosis’. As a result, we are truly a family dedicated to helping others that share our circumstances, common 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.
I have worked in the financial services industry for 35 years, the last 17 with Charles Schwab. I spend most of my time speaking at client events on a broad array of topics including behavioral finance, portfolio management strategies, current events and the state of worldwide markets and economies. Anne works in the corporate wellness field and is the backbone of our family. She has been a local 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.
I am honored to have been accepted as a member of the NFXF Board of Directors! My passion and desire is to use my experience with communication strategies, business development and advocacy efforts in order to inspire folks to continue to “spread the word” and enhance the ongoing financial fitness of our organization.
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.
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.
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!
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.
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.
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 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.