Ellen L. Cohen Cert.Ed., Dip.Ed., CHCP

Ellen has 40 years of continuing medical education, special education, program development and strategic planning experience in the United States and the United Kingdom. She is an active member of the Alliance for Continuing Education in the Health Professions (ACEHP), the Accreditation Council for Continuing Medical Education (ACCME) and is a Certified Healthcare CPD Professional (CHCP).

She has previously served as Director of Continuing Medical Education at MedStar Washington Hospital Center and the Association of Reproductive Health Professionals. Currently, she serves as Director of Continuing Medical Education at the American College of Cardiology in Washington DC.   Ellen received her undergraduate and graduate degrees in Special Education, Educational Psychology and Sociology from the University of London, Institute of Education

Brian Dubin

Brian is the Co-owner of Educated Cleaners, a Maryland-based environmentally-conscious commercial cleaning company and he serves as the Director of Business Development for the area's largest direct hard money lender, BlueWater Funding based in Rockville, MD. He is an active member of the Washington, DC community and a lifelong volunteer and advocate for multiple causes. From his early volunteer work with Autistic children to later work as the Head Director of the American Red Cross Eagle-Vail branch and to today’s involvement with Washington Hebrew Congregation, he continually strives to do what he can to make a positive difference in the world.

Brian is a graduate of the University of Wisconsin, Madison He received his B.A. in Mass Communications. Brian and his wife, Beth, have a son, Asher (11) and a daughter, Andi (9) who are regular volunteers in the community.
Gail Jutkowitz

Gail Jutkowitz has a BS degree in Education from Northwestern University. She is a retired teacher with the Montgomery County Public School District of the State of Maryland. Prior to teaching Ms. Jutkowitz had been an executive with a large retail chain responsible for management development. Over the years she has served on numerous committees on fundraising, curriculum development and school leadership. Her strengths have been her ability to motivate, educate, lead and inspire her students and their parents.

Missy Miller

Missy Miller was born and raised in Atlantic Beach, NY where she still lives with her husband Brandon and children Katy and Oliver. She has dedicated over 25 years to healthcare, services, and the wellbeing of children. Having raised two children with complex medical problems, and losing her oldest daughter Melanie to Cockayne Syndrome, Missy adapted what for most is unknowable tragedy into a life of advocacy and professional experience caring for the chronically ill. In both professional and volunteer capacities, Missy has trained hundreds of pediatric residents to understand the broad range of social, emotional and physical challenges faced when working with chronically ill children, and serves as a knowledge resource for countless families. In recent years, Missy has also championed chronic health issues as a change advocate in New York State. As a leader with Compassionate Care New York – a statewide group of patients, providers and organizations advocating to relieve the suffering of extremely ill patients – Missy worked with local leaders and legislators to pass New York’s medical marijuana law. The Compassionate Care Act made New York the 23rd state to authorize treatment for thousands of New Yorkers with debilitating and life-threatening illnesses, including her son Oliver. Missy was awarded the New York State Senate Woman of Distinction Award in 2015 for her effective participation in the legislative negotiations. Missy was elected to the New York State Assembly in 2016. Drawing strength from her children’s perseverance to survive despite all odds, Missy brings a proven understanding for how to get things done in Albany while advocating for any and all issues affecting her community.

Shari D. Shaw JD

Shari brings her passion for children and advocacy for medical research to cure disease to NICS. She holds an A.B. in History (with distinction) from Cornell University and a Juris Doctorate (Order of the Coif) from the Marshall-Wythe School of Law at the College of William & Mary. Currently, she serves as an Assistant General Counsel for The Henry M. Jackson Foundation for the Advancement of Military Medicine, Inc., a Maryland 501(c)(3) organization with a global presence dedicated to advancing military medicine for the mutual benefit of civilian and military health.

Nikki Herson Cohen, President

Nikki is a mother of three children, one of whom suffers from Cockayne Syndrome. Previously, she has held a senior management position in the automotive industry in Maryland. Her current passion is educating and advocating for children and families living with Cockayne Syndrome. Nikki works tirelessly to bring CS into the mainstream, fundraising and raising awareness of Cockayne Syndrome in the medical community.

Nikki holds a triple BA in political science, sociology and psychology as well as an MBA from the George Washington University in Washington, DC.

Ronald E. Cohen, Secretary and Treasurer

Ronald Cohen is an accomplished real estate executive with a successful track record of projects and investments totaling over $3 billion. He is a principal and head of US operations for James Andrew International which advises clients on all aspects of real estate in the USA, UK, Europe, Asia, the Middle East, Central and South America.

For the past 25 years Ronald has also been President and a Trustee of the International Friends of The Natural History Museum London, one of the world's best known museums and a major scientific research institution.

Robyn Hyer

Robyn Hyer is from New Orleans, Louisiana where she attended Isidore Newman School. It was at Newman that Robyn developed her passion for philanthropy, growing up helping her mother stuff envelopes for charity and buying food the day before Thanksgiving to bring to local shelters. She holds a BA in Elementary Education and MA in Special Education from American University. Robyn has taught both regular education and special education in Montgomery County, Maryland since 2000, taking a break for several years to say home with her two amazing daughters. While sitting on the Parent Board for her oldest daughter’s nursery school, Robyn realized her New Orleans personality was a benefit when soliciting gifts for the schools fundraiser and there her passion was reignited. Robyn has since run several successful fundraisers all centered around children.



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National Initiative for Cockayne Syndrome, incorporated in the State of Maryland, is a not-for-profit charity under section 501(c)(3) of the Internal Revenue Code and has full tax exempt status. Maryland Sales and Use Tax Exemption Number 31208646.

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