Governance
Our Board of Directors is responsible for determining the organization’s mission and purpose, ensuring adequate resources and financial oversight and overseeing the programs and services provided by Dup15q Alliance. The board delegates responsibility for day-to-day operations to the corporate officers and committees. Board Members serve without compensation are expected to contribute or raise at least five thousand dollars per director annually.
Dup15q Alliance is looking for individuals specializing in one or more of the following: Science, Social Work, Nursing, Pharmaceuticals, Counseling/Mental Health, Regular or Special Education to join our group of caring and experienced professionals.
Questions can be sent to us at board@dup15q.org.
BOARD OF DIRECTORS
Lisa Feehery (2020-present): Co-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.
Anne Karch (2019 – Present): Co-Chair
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.
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.
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.
Joe Ivan (2022-present): Board Member,
Sarah Thacker (2023-present): Board Member,
Sarah earned her bachelor’s degree from Clemson University (Go Tigers!). She has fifteen years of experience in the healthcare industry and currently heads Enterprise Claims for Voya Financial, where she is daily able to influence corporate strategy that places the customer at the forefront of her organization’s work. She is genuinely thrilled to bring that same customer-minded approach to the board in service of the many families it supports.
Towards the end of the pandemic, Sarah relocated from South Carolina to St. Louis with her husband, Ryan, and their son, Egan. Shortly after settling into life in their new city, Egan was diagnosed with Dup15q syndrome at age 2. That phone call changed her family’s world and the subsequent support she received from the Alliance left her looking for a way to give back in kind. While she is a relative newcomer to this community, she is already amazed and humbled by the depth of knowledge, warmth of welcome, and fierceness of advocacy she has witnessed in its members. She is honored to serve in any way she can.
When she isn’t working, Sarah loves to experiment in the kitchen, hike as often as possible, travel wherever she can, and take backpacking trips with her husband and son.
Sophia Cacciatore (2023-present): Board Member,
Sophia Cacciatore has nearly a decade of experience in policy and advocacy relations in the life sciences industry. She is the associate director of patient advocacy at Ovid Therapeutics, where she spearheads community engagement and integration to help bring medicines efficiently to families affected by epilepsy. Prior to joining Ovid in 2020, Ms Cacciatore held roles of increasing responsibility for the New York City Economic Development Commission, where she worked to integrate local community initiatives into New York’s growing life sciences presence. During her tenure at the EDC, Ms Cacciatore worked with biotech startups to identify meaningful interventions and encourage strong relationships with local and national community leaders. Before that, she was the policy coordinator for the Emerging Companies sector of the Biotechnology Innovation Organization, where she supported the team’s research for PDUFAV negotiations, and was the Government Affairs Fellow for BGR Group, Washington’s premier, bipartisan lobbying firm. Ms Cacciatore takes a patient-centric approach to every problem/solution, and her proudest achievements are the relationships she has made across caregiver and patient communities. She received her bachelor’s degree in telecommunication management at the University of Florida.
FORMER BOARD CHAIRS
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.”
David Gifford, Board Chair (2018 – 2022)
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.
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.
Paul Karch, Board Chair 2013 to 2015
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.
