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.

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.”

Joe Elassal, MD (2018-present): Board Member,

SAB/MAB Representative

Joseph received his undergraduate degree from the College of William and Mary, his MD from Eastern Virginia Medical School, and his MBA from Columbia University. He has prior experience working in medical affairs where he was responsible for working/engaging with patient advocacy organizations. Joseph is the Senior Medical Director at Replimune and is also a board-certified internist who remains clinically active. He joined the Dup15q Alliance Board in June of 2018 and has been acquainted with the organization and it’s exceptional work through a close friend whose child was diagnosed with Dup15q syndrome nearly a decade ago. He hopes to leverage his years of experience in a variety of roles in healthcare and clinical research and his passion for serving patients to help expand the Alliance’s outreach to the medical community, expand partnerships with the pharmaceutical industry, and continue to develop the potential of the international medical registry. Joseph enjoys spending his free time hiking, traveling, cycling, and listening to live music. 

Julia Jordanich (2019-present) : Board Member,

Governmental Advocacy Committee Co-Chair

Julia has an extensive legal background in guardianships and policy change. She received her BA in Political Science from the University of Washington and her SD from Suffolk University. Julia is a board member for the Protective Service Board at Logan, which serves as guardian for approximately 40 adults who are intellectually disabled. After she spent some time prosecuting child abuse cases in Washington D.C. for the Office of Corporation Council, she was the director at Adult Protective Services and managed investigations of neglect and exploitation of vulnerable adults with disabilities. Julia has also taught numerous courses at Indiana University South Bend in the criminal justice department and worked as a Legislative Director for a state senator for 3 years. Julia’s 7 year old daughter has Dup15q syndrome, so she is very passionate about applying her advocacy skills to help other families living with Dup15q. She hopes to continue being intimately involved with education advocacy for children with intellectual disabilities. When she’s not busy at work, Julia loves to spend her time reading. 

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. 

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,

Thank You Committee Chair

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.

Tessa Quinlan: Board Member,

Conference Planning Committee Chair

Tessa has her bachelor’s degree in Business Administration and has worked for not for profit organizations, as well as in the healthcare field for Alzheimer’s patients. Her son, Gavin, was born with Dup15q syndrome. Despite his disability, Gavin has taught the family so much. Tessa wanted to feel a part of the community that supports her son and wanted a way to give back. She is a true believer in advocacy and educating those who may not be aware of rare disease. Tessa has been the Family Conference Chair for the past 2 conferences and so far she has also hosted 7 fundraising events that have been all in efforts to raise money for Dup15q Alliance. Each event has increased in size with attendees and in those 7 events, over $125,000 have been raised. Aside from organizing large events, Tessa also enjoys taking on a variety of different roles within the community. Tessa is a former board member of her son’s grammar school special needs district, a founder of her local special recreation association’s Disability Fair, and a Tournament Director for her daughter’s travel softball team. She is also a co-administrator for a caregiver special needs Facebook group that helps match families and caregivers. 

Carlos Romero (2020-present): Board Member,

European Task Force Chair

Lisa Feehery (2020-present): Board Member,

Education/IEP Committee 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 (2020-present): Board Member,

Adult Life Committee Chair, Sunshine Committee Chair, State Representative Chair

Anne has been involved in the Dup15q community for some time now, as her daughter, Rachel, 33, has Dup15q syndrome. For three decades, she 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 would like to work towards 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 PhD in Curriculum and Instruction, along with a masters 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 professionals who care for their daughter Rachel (age 33) to help Rachel live a full life while keeping a lid on the seizures.

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 5q 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.