Governance

BOARD OF DIRECTORS

David Gifford, Board Chair (joined the Board in 2015/ Board Chair 2019 – Current) 

David has his BS and MS in Engineering and has been involved in project management for over 30 years. He has a significant amount of experience working in diverse environments with a wide range of people, which has allowed him to become comfortable in various leadership roles. He is currently the project director at Fluor, as well as the board chair member for the Alliance. David and his wife Rosemary have two children and have been married for 50 years. His first grandchild, Sarah and Mike Porath’s daughter, Annabel, has Dup15q syndrome. After attending several family conferences, he felt that there was more he could do for the community and the board provided him the opportunity to learn and get involved. Annabel was the main inspiration for his desire to serve on the board. Some of David’s outside interests include photography, bird watching, and traveling.

Lisa Feehery (2020-present): Vice Chair

Lisa earned her BA and MA in International Policy from Stanford University, along with her MBA from Sloan School of Business from M.I.T. and her JD from Harvard Law School. She has an extensive background in corporate strategy, which includes Boston Consulting Group, technology companies, and financial services. She also currently advises local special education families on IEP issues and participates in advocacy and support groups. Lisa is eager to share her experience being an educational advocate to help other families navigate the IEP process. She has four children, ages 13, 16, 18, and 20. Her fourth child, Gavin, 13, has Dup15q interstitial and as he has gotten older, Lisa is excited to have more time to serve the Dup15q Alliance. During her free time, her family travels extensively, which brings great joy to Gavin, who loves being on vacation. 

Donna Bennett, Co-Founder, Board Member Emeritus

Dup15q Alliance was originally founded under the name of IsoDicentric 15 Exchange, Advocacy and Support (IDEAS) in 1994 by Donna Bennett, mother to Joshua (a young man with idic15) and Brenda Finucane, MS, CGC the Director of Genetic Services at Elwyn Inc.

Donna Bennett did not have a name for the symptoms of her son Josh  for the first 11 years of his life. His symptoms included developmental delay, hypotonia of muscles, impaired cognition and speech, and seizures. She had no diagnosis or information to help her. Then one day in 1987, Donna and Josh walked through the doors of Elwyn Institutte in Elwyn, Pa., and met Brenda Finucane, a genetic counselor. Brenda told Donna, “I don’t know what has caused this, but together we are going to figure this out.” Donna and Brenda became a powerful team. In 1992, Josh was diagnosed with an inverted duplication of his 15th chromosome (today referred to as isodicentric chromosome 15 syndrome or idic(15) ). There was no literature about this condition. They did not know of any other people who had the same or a similar diagnosis. One day Brenda noticed a letter from a parent in a 1990 issue of Exceptional Parent Magazine. The mother wrote, “Our daughter…has a disorder of the 15th chromosome…The disorder seems to have affected all areas of her development…we have never been able to find any documentation on this exact disorder. We would like very much to find someone with 15q+.”  This was the birth of IDEAS in 1994. Starting as a list of 13 families raising children with chromosome 15q duplications, the support group grew.  All Alliance families are grateful to Donna and Brenda for bringing us all together to continue to “figure this out.”

Vanessa Vogel-Farley, Board Member

Vanessa grew up on a family dairy farm in rural Wisconsin; she then went on to college at the University of Minnesota-Twin Cities, where she studied Chemistry, Biology, and French.  While there she joined a research lab at the Center for Neurobehavioral Development. This experience got her interested in the processes associated with brain development during the neonatal period into adolescence and that factors that can affect normal development.   She was the Clinical Research Coordinator for the Division of Developmental Medicine Laboratory of Cognitive Neuroscience, Boston Children’s Hospital, working on collaborations with scientists from MIT and Harvard examining several clinical populations, including autism.  She also served as Director of Operations of ACEing Autism from 2008 through 2015.  She is married and the mother of 3 young boys (Oliver, Thatcher, and Carter) who keep her very busy in her “spare” time.​  Vanessa served as the Executive Director of the Dup15q Alliance from 2016 – 2021. Vanessa joined the Dup15q Alliance Board in 2021 to lead the Science and Research Strategy. 

Anne Karch (2019 – Present)​: Secretary,

Anne has been involved in the Dup15q community for some time now, as her daughter, Rachel, 35, has Dup15q syndrome. For the past three decades, Anne and her husband Paul have been proud advocates for Rachel and other people with disabilities. Anne is motivated to give some long-term perspective to parents of younger Dupers and to provide more information about adult life for Dupers to the Alliance community. She would also like to work toward strengthening regional gatherings and extended family connections. Anne has 13 years of experience helping struggling readers in elementary school and also has a strong background in adult/parent education. She holds a Ph.D. in Curriculum and Instruction, along with a master’s degree in Reading, and a certificate in Teaching English Language Learners. Some of Anne’s other interests include hiking, reading, gardening, cooking for large groups of people, knitting, and quilting. Anne and her husband Paul are dedicated to working with the medical and service professionals who care for their daughter Rachel to help Rachel live a full life while keeping a lid on those seizures.

Tony Marmo: Board Member, Treasurer,

Finance Committee Chair

Anthony attended the University of Rhode Island College of Business. He is a business owner and investor in the healthcare industry and is currently the CEO at Martab Medical. He has prior experience being on the board for a non-profit organization, along with experience in investing in the startup medical device industry. As the President of Independent Medical Distributors Association, Anthony had earned the Ernie Doughs Award. He was also involved with the Epilepsy Therapy Project. His business and organizational skills are some key strengths that will help advance the Alliance. Anthony’s daughter, Madison, 18, has Dup15q syndrome and continues to inspire him to help improve the lives of people and families living with Dup15q syndrome. During his spare time, Anthony enjoys the game of golf. 

Steven Kadner (2019-present): Board Member

Steve received his Master of Mechanical Engineering from New York University. For over 50 years, he has directed the efforts of small businesses, large corporations, and nonprofit entities in support of national and international nuclear safeguards programs by providing customized technology solutions to government and nongovernment organizations worldwide, and currently serves as Executive VP of Aquila. Steve has also served on a number of corporate, advisory and not for profit boards and hopes to bring this experience to the Dup15 organization. He and his spouse, Kathleen are grandparents to Max and Dylan (Dup15q) Kadner. Outside of work, Steve enjoys spending his time with family and being a grandfather. 

Mike Porath: Board Member,

Mike earned his bachelor’s degree from the College of William and Mary. He has spent most of his career working as an award winning journalist and digital media executive for a variety of companies, such as ABC News, NBC News, The New York Times, and AOL. Mike is currently on the board of directors for NORD (National Organization for Rare Disorders). He and his wife, Sarah, have four children together and live in the suburbs of Los Angeles. Their 13 year old daughter, Annabel, has Dup15q syndrome and was a big inspiration to both of them. This inspiration led them to build one of the world’s leading health communities, The Mighty, which is a media and digital health company designed to help people facing any kind of health condition. In 2017, Town & Country named Mike one of the top 50 philanthropists. The Society of Professional Journalists has also awarded him the top prize in online journalism for his reportings in Kosovo. As a board member for the Alliance, Mike hopes to continue to apply his knowledge in media/communications, building various connections, and keeping the big picture vision in mind. During his spare time, Mike is an outdoor enthusiast and enjoys trail running.  Mike and his wife Sarah are currently focused on helping Annabel with her behavioral skills and reducing her anxiety. They want their daughter and others with Dup15q syndrome to enjoy as much happiness and independence as possible.

Carlos Romero (2020-present): Board Member,

European Task Force

Sam Quigley (2022-Present): Board Member,

Sam Quigley is founder and CEO of Kicho Inc, an organization dedicated to finding therapeutics for people with Dup15q Syndrome.  The name Kicho derives from a nickname for Sam’s son, who has isodicentric dup15q.  Prior to his work with Kicho, Sam was an executive and engineer at Square, where he was responsible for information security, risk management, and machine learning infrastructure.  Sam lives with his family in New York City, where he is an avid foodie and amateur cook.

Elina Marchenko (2021 – Present)​: Board Member,

When Elina found out her younger sister was diagnosed with Dup15q, her life changed forever. As a young child in an immigrant family, Elina became a key caretaker while simultaneously trying to navigate the ups and downs of a brand new culture. With much work and determination, Elina ultimately found success, parlaying her Northwestern education into a career in production, first in reality television, then as a Senior Producer at Jim Beam, and finally, as a multi-platform guru of the advertising and marketing space. Today, Elina spends her days in constant communication with her clients, turning their brand dreams into a reality, even as she shepherds her own children into adolescence. Sadly, her sister passed away in 2011 and since that time, Elina has dedicated herself to ensuring that siblings in the Dup15q community have the attention and resources they need to support their brothers and sisters. She joins the Board with a long history of activism and advocacy and looks to bring her expertise to bear on improving the lives of those touched by Dup15q.

Jacqueline Vanderhoof (2022 – Present)​: Board Member,

Jackie holds a dual BS in Spanish and Art History from the University of Delaware. After graduating she began her career with a Financial Services Group coordinating and leading 401K education programs for Spanish-speaking clients. That experience led her to her current position as a Project Manager for a software company that focuses on website design and development for clients in highly regulated industries- specifically financial services and pharmaceuticals.

In March of 2021, after a month of inexplicable seizures as an eight month old, Jackie’s daughter was diagnosed with Dup15q. She is looking to leverage her experience in the pharmaceutical space to raise awareness of the disease and to accelerate therapeutics that can improve the quality of life of all individuals with Dup15q. When not working or keeping up on rare disease research, she enjoys spending time with her family, horseback riding and gardening. 

FORMER BOARD CHAIRS

Tom Doyle, Board Chair (2015-2018)

I am the grandfather to Grace Lowell and joined the board to try to support the families who are living with dup 15q.  My “real job” was as a high school teacher and athletic director for 30 years.  Now I am doing some work with high school athletics, mentoring new athletic directors, and teaching workshops on True Colors.  Volunteering has been part of my DNA since introduced to it in high school and I understand more and more as I get older how important it is to “give back” to those who need some type of support.  The moms and dads who so courageously, graciously, and patiently raise their dup 15q sons and daughters are the real heroes.  I am honored to be a part of their journey.

Len Poore was a member of the Board of Directors, joining the board in 2008, and serving as the Board Chairperson from 2011 to 2013.  

Nicole Cleary served as the board chair for IDEAS (the nonprofit that eventually grew into the Dup15q Alliance) from 2001 – 2010.