Colleagues & Parents

“I have never worked with a kinder, more capable leader than Robby Miller. He grasps scientific concepts quickly, brings key players to the table to accomplish goals, makes newcomers feel welcome, and is not afraid to speak up when he feels it is warranted. He is perceptive about group dynamics and works with a wide variety of people—from developmentally delayed children to highly educated professionals. He rolls up his sleeves to make sure everything gets done flawlessly. Robby is a man of wisdom, kindness, and integrity. He is the consummate professional and leader. I loved working with him and would do so again in a heartbeat. Any organization would be lucky to have Robby working for or leading them.” 
—Gwen M. Glew, MD, MPH, FAAP
Developmental Pediatrician

Seattle Children’s Hospital and the University of Washington  


"During his tenure, the National Fragile X Foundation (NFXF) grew from a "Mom and Pop" operation into a major national/international organization. My work with Robby primarily focused on the development and ongoing success of the Fragile X Clinical and Research Consortium (FXCRC) which Robby and I co-founded. Since his departure from the NFXF, he has received much praise for his multitude of contributions to the Fragile X community over the years. He is not only an amazing leader, he is well-spoken, has tremendous interpersonal skills, and has numerous personal contacts with important and strategic agencies. He would be a momentous contributor in the advancement of any disease organization."

—Jeannie Visootsak, MD, FAAP
Associate Professor, Developmental-Behavioral Pediatrics
Department of Human Genetics & Pediatrics
Emory University School of Medicine


“Robby is an outstanding leader who for years successfully 'united the Fragile X community' in carrying out the mission of the National Fragile X Foundation. The associates of the organization grew up and thrived under his leadership, families had access to support and resources in their continuing journeys of creating fulfilling lives with families touched by Fragile X, and clinicians and researchers were encouraged and allowed to do their 'best work' in improving the lives of families affected by Fragile X. I highly recommend Robby as a leader, a parent, and as a caring human resource professional.”

—Marty Lang
Former Chief Financial Officer Famous Footwear, MBA, CPA
Former Board member and Treasurer of the National Fragile X Foundation
Life-long parent of four darling daughters who also happen to have Fragile X Syndrome


“I have great respect and admiration for Robby, not only for his evident skills over many years as an executive director of a non-profit foundation, but also for his deep compassion for the families whose lives he endeavors to improve. He is a true educator as well as an outstanding administrator. He understands why non-profits exist and develops often-creative guiding principles to ensure that the mission of the organization remains focused on the needs of those being served. Robby is a scrupulously honest, straightforward and caring individual who would be a major asset to any organization fortunate enough to secure his talents.”

—Paul J. Hagerman, MD, PhD
Distinguished Professor
Department of Biochemistry and Molecular Medicine
Investigator, UC Davis MIND Institute
University of California, Davis, School of Medicine


"The Fragile X Society of India was formed in 2003. We have extended help and support to many families across the country and continue to do so. Robby's belief was the foundation stone of our organization. His expertise helped us grow steadily and make a big difference. Under his guidance we have accomplished the herculean task of spreading awareness in our country. We look forward to taking our awareness drive to a higher realm very soon and we can only trust Robby's experience on it."

—Shalini N. Kedia
Parent and Advocate
Chairperson, Fragile X Society-India


"In over three decades of involvement with scores of investigators, project leaders and administrators at research institutions, foundations and the public sector, Robby Miller is among the most dynamic leaders and motivators I have had the pleasure to work with. Robby is a wonderful presence in meetings, conferences and phone calls—he inspires without dominating, encourages participation and acknowledges contributions. He works well with people at all levels, gets productive discussions going—and keeps them on track! In a word, people like and respect Robby. He also has excellent skill in identifying and hiring the right people to make a project succeed. Finally, Robby has excellent writing skills; his memos, emails and longer issue-oriented documents are clear, thoughtful and well-expressed. In the project I worked on under Robby’s leadership for more than six years, he always presented our work in the most positive way to potential funders, to grants administrators and to leaders of the clinical and scientific community. I would recommend Robby without reservation."

  —Howard F Andrews, PhD  
Director, Data Coordinating Center & Associate Professor of Biostatistics and Neuroscience
Columbia University Medical Center, New York


“I have worked with Robby Miller in a variety of roles over the years, perhaps most closely during my tenure as President of the Board of Directors of the National Fragile X Foundation. I have the highest respect for Robby, his leadership and his relationship skills. Perhaps most importantly, he has a deep understanding of human service issues, always working to see things from the side of families and other recipients of services. His longstanding commitment to the well-being of those in need of services will be a powerful asset to any organization.”

—Don Bailey, Ph.D., Distinguished Fellow
RTI International


"I have worked closely with Robby over the past 13 years on projects and initiatives in the fragile X field. He is extremely resourceful, committed and creative and has had an incredible ability to identify and generate ideas for addressing the needs of affected individuals, families and the community. Robby has unique skills that have allowed him to bring together groups of clinicians, public health organizations and families of children with disability, and then generate the enthusiasm and spirit of cooperation that has resulted in collaborations that have truly improved the lives of these families. It has always been clear that Robby has an undying passion for people and is driven tirelessly to solve problems that will improve care and reduce life burden for those for whom he works, and I would recommend him strongly and believe he would be an incredible asset to any human service project or organization."

—Elizabeth Berry-Kravis, MD, PhD
Professor of Pediatrics, Neurological Sciences, Biochemistry
Director, Fragile X-Associated Disorders Program
Director, Fragile X Clinic and Research Program
Rush University Medical Center, Chicago, IL


"I think there is hardly anyone who has done more work for families with Fragile X than Robby Miller. His tremendous, indefatigable efforts have helped many people not only in the United States, but in many countries internationally. Through his structured way of thinking and working, any cooperation with him is not only very effective, but also a great pleasure."

—Dr. Jörg Richstein
Chairman, Interessengemeinschaft Fragiles-X e.V. (Fragile X Association of Germany)
2nd Vice Chairman of the German Alliance for Rare Diseases (ACHSE e.V.)


"As a constituent of the NFXF, Robby always made time for me and every other parent/grandparent by taking whatever time was necessary to empathetically answer all questions. As a board member I witnessed for six years of my entire board tenure his tireless efforts starting before breakfast meetings and ending well after dinner. Robby was always prepared and gave far more than any director should be asked of his time to my cause."

—Joseph A. Christoff
Christoff & Christoff
Former Board member and Secratery of the National Fragile X Foundation


“I have known Robby for more than ten years. He has the unique ability to be the consummate professional while being intensely interested and personable with families and his colleagues. His warmth is only surpassed by his knowledge and experience working in the field of developmental disabilities. As his colleague at the NFXF I was empowered and encouraged to develop new programs and materials and to publish in peer reviewed journals. Robby is a team builder and has tremendous skill in bringing professionals of all backgrounds together to "make things happen". I have no doubt that many of the advances in the treatment of individuals with fragile X-associated disorders are a direct result of his efforts and collaborations with scientists and clinicians in the field.”

—Liane J. Abrams, MS, LCGC
Licensed and Board Certified Genetic Counselor
Adjunct Professor of Biology
California State University, Stanislaus


“When Robby Miller says 'Organizational growth and idealism are compatible' he is describing his own success in growing the National Fragile X Foundation from a loose group of families, clinicians and researchers to the internationally-known organization it is today. He never wavered from the ideal of serving the needs of people affected by this genetic disorder, bringing together these communities for a common goal with compassion, vision and tireless effort. It was always a pleasure to work with him and to see what expert administration can accomplish.”

—Andrew Levitas, MD
Associate Professor of Psychiatry
Rowan University-SOM Medical Director
Center of Excellence for the Mental Health Treatment of Persons with Intellectual Disabilities


"I have worked with Robby over the years as part of a community of families, researchers and clinicians who are committed to increase the quality of life for individuals with developmental and intellectual disabilities. Robby is a leader and has a style that pushes you to lead. His work behind and in front of the “scene” is always collaborative, motivating and highly productive. He brings management skills, enthusiasm, and insightful and creative solutions to the table. I highly recommend Robby and look forward to my next project with him."

—Stephanie L. Sherman, PhD
Professor, Department of Human Genetics
Emory University School of Medicine, Atlanta, GA


“As the dad and Board member who recruited Robby to the NFXF, and having worked closely with him during my tenure as Board President, I have nothing but the highest regard for his expertise, insight and work ethic. His role in the development of the Fragile X Clinical & Research Consortium, among other successful projects, has changed the landscape forever when it comes to care for children such as my sons. I join with hundreds of other parents in thanking him for his contributions.”

—John M. Harrigan
Parent and former member of the National Fragile X Foundation Board of Directors


"Robby Miller possesses an unusual combination of wisdom, experience, and knowledge of human behavior that would make any human service project or organization successful."

—Walter E. Kaufmann, MD
Harvard Medical School


“I have known Robert for many years. The most important thing is that he believed in our project. He encourage us to work and make it real. He helped every way he could to bring help to my country Colombia. Robert brought great insight and skill in forming a fragile X association in Colombia. By using his knowledge and donating his time he was able to help many families in need, giving them counseling and empowering them to continue working for the lives of their kids. I strongly recommend Robert not only for his background and all the wonderful things he has done, but also for his heart and commitment.”

—Sergio Villada
President, Special Kids Foundation
Founding Member, Fragile X Association of Colombia


“Having worked closely with Robby on an international research and service delivery trip, I can enthusiastically vouch for his skill, cultural awareness and sensitivity, persistence and organizational skills. I particularly enjoyed interpreting for him during an hour-long, impromptu lecture to medical students!”

—Sergio Aguilar-Gaxiola, MD, PhD
Director, UC Davis Center for Reducing Health Disparities
Professor of Clinical Internal Medicine
UC Davis MIND Institute


“Robby Miller has been my most valued friend for over 45 years. As a human service professional, Robby extols the virtues of compassion and empathy, virtues clearly exemplified in his roles as a teacher, school administrator and executive director. His commitment to his profession and strong work ethic endears himself to all he comes in contact with and his easy-going manner engenders trust and respect. Robby has truly risen to the top of his class, and his service has, and continues to be, as remarkable as his person.”

—Louis Denti, PhD
Lawton Love Distinguished Professor in Special Education
California State University, Monterey Bay