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.  

Our Professional Advisory Board provides medical and research expertise.

BOARD of Directors

David Gifford, Board Chair (2019-current)

Rosemary and I have been married for 47 years.  We have 2 wonderful children, David and Sarah, and five beautiful grandchildren.  Our first grandchild, Sarah and Mike Porath’s daughter Annabel is a Dup15q child.  She is a wonderful, magical child, now 10 years old.  She is the reason that I learned about this organization, and why I wanted to be on the Board.  I am an engineer by education however I have been involved in project management for over 30 years.  I believe that this experience will benefit our organization and I am currently concentrating on our organization’s governance.  I believe we are on the cusp of moving in a very exciting growth of our alliance regarding growth in the science and research fields as well as improving the key clinics that our families will be interfacing with, and all the while improving the key support for our families.  I am very proud to be involved with this organization.

Donna Bennett, Co-Founder, Board Member Emeritus

 

 

 

 

 

Guy Calvert, D.Phil., Board Member, SAB/MAB Representative

Guy joined the board in 2011 and headed up the Alliance's research agenda. By background he is a math PhD, and works at Twitter on the marketplace engineering team as a data scientist with a focused on auction design. He came to Twitter after 7 years at Google as a research analyst where he also focused on ad auctions, and 10 years on Wall Street as a quantitative analyst. He also spent a year as a road gambler, playing poker tournaments and cash games. Outside of work he enjoys spending time with his wife and two children, reading, playing board games, fighting for freedom, driving medical research, and contesting the World Series of Poker.

 

 

Joe Elassal, MD (2018-present): Board Member, SAB/MAB Representative

Joe joined the Dup 15q 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 Dup 15q Syndrome nearly a decade ago. Joe currently lives in Washington, DC and serves as a Deputy Vice President at the Pharmaceutical Research and Manufacturers of America, working on regulatory policy advocacy for biologic medicines, biosimilars, and issues related to generic drugs. Joe is a board-certified internist who remains clinically active working in the hospital once a month and has a career spanning roles in late-stage clinical development, medical affairs, marketing, and equity research. He 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 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.  

Fernando Gomez: Board Member, Transitional Living Committee Chair, International Outreach

Fernando Gomez joined the Dup15q Alliance Board in 2013 to support the International Relations projects. He and his wife Diane live in New Jersey and are the parents of two beautiful teenagers: Allison (19,Dup15q) and Michael (16). After an extensive career in Technical Sales and Marketing roles, Fernando is now the General Manager of a Consulting firm. He earned a BS Degree in Electrical Engineering from Rutgers University and an MBA from Lehigh University . When not at work, Fernando and Diane work on the flower and vegetable farm in the growing season, ride the tractor and bike/trike with the children, or splash in a swimming pool somewhere, as school and work schedules allow.

Julia Jordanich (2018-present) : Board Member, Governmental Advocacy Committee Co-Chair

Five years ago I didn't know anything about Dup15q, nor did I imagine a life with a child with special needs. But life, as we all know so well, tends to throw a few curve balls.  And honestly, I wouldn't wish for my life to be any different.  I find that the Dup15 "curve ball"  lends itself  to a philosophical dilemma insofar as how one is to expend his or her energy.  It's easier at times to turn inward and to focus on coping with Dup15q within each of our respective families.. That being said, there is also such a critical need for each of us to reach out to respond to the needs of the Dup15q community.   At this point in my life, I feel  that I am ready to take on more of an "outreach role.".  While I am devoted to the care of our Dup 15q daughter (and two other daughters, ages 13 and 11), I still have the energy (amazingly!)  to do whatever I can to support the mission of the Alliance.  This is because I believe that the Alliance is an extraordinary entity, insofar as its information, research, and family support services are critically needed for our Dup 15 families.  And just as importantly, it also serves as a  wonderful tool for individuals (such as teachers, therapists, doctors, researchers, the media, etc., etc.) to learn about this syndrome.   This is just a long way of saying that I passionately believe in the Alliance's mission, and I'd like to help in any way possible.

Steven Kadner (2019-present): Board Member

Steve joined the Board in January 2019.  Steve and his spouse, Kathleen are Grandparents to Max  and Dylan (Dup15q) Kadner. For over 40 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.

 


 

Tony Marmo: Board Member, Treasurer, Finance Committee Chair

Tony Marmo joined the Dup 15q Alliance board in July of 2016.  Tony lives in Upper Saddle River, NJ with his wife, Nicole, and three children, son Tyler, and daughter’s, Samantha and Madison.  He has extensive experience in the healthcare market and in non-profits and brings a wealth of knowledge to the board.  Tony owns and operates Martab Medical, a business focused on providing innovative products and services to the healthcare market and is the founding member and managing partner of the Marmo Group, LLC, a company that invests in start-up medical device companies that create new and innovative products and services.  He has served as the President of the Board of Directors for the Independent Medical Distributors Association (IMDA) and worked on the Epilepsy Therapy Project as a reviewer of medical devices focused on Epilepsy.  Tony and his wife, Nicole, helped establish and served on the Board for the Garden Academy, a school that serves children with Autism.  When Tony joined the board, he indicated that he’d “like to serve on the Board to help promote awareness as well as advance clinical research for people living with DUP 15 Syndrome.  Specifically, I'd like to leverage my 20 plus years of experience in the medical device and healthcare industry to help the DUP15 Alliance and its research partners discover targeted treatments that will help improve the lives of our children.”  We are grateful to Tony for his willingness to share his expertise and his passion with our families and the Dup 15q Alliance.

Mike Porath: Board Member, Development/Fundraising Committee Chair

I’m the dad of a 10-year-old girl with Dup15q syndrome. My wife Sarah and I also have two younger boys and we live in the suburbs of Los Angeles. The Dup15q Alliance and the people in our community (all of you!) have been so helpful to our family in so many ways. I joined Dup15q Alliance’s board several years ago with the hope that I could help it support more families and drive more research that I believe will ultimately lead to improving the quality of life for people with Dup15q syndrome. Currently I serve as fundraising chair. I have spent most of my career working as a journalist and digital media executive at ABC News, NBC News, The New York Times and AOL. A couple of years ago, Sarah and I decided to build The Mighty (TheMighty.com), a media and digital health company designed to help people facing any kind of health condition. The inspiration for The Mighty was of course our daughter Annabel, but it was also Dup15q Alliance. I love being part of this community. 

 

Tessa Quinlan: Board Member, Conference Planning Committee Chair

I have been married for 15 years to my husband and we welcomed three children into our lives.  Gavin age 12 (dup15q), and our two daughters, Ava age 10, and Addisyn age 6.  They are all blessings in our lives.  I currently work part time for my son’s private therapy clinic as a parent liaison working with families entering the special needs system or already in the system.  I provide them assistance when it comes to academic resources, referrals, resources state funding within our state, recreational outlets for their child, and just an ear to listen.  I love what I do.   We became a large part of the Dup 15q Alliance because we really want to know more about a syndrome that has entered our lives unannounced.  We also want to make sure that we give back to a community that has done so much for us and for our child.  We never stop believing the world of possibilities for Gavin.  We never take anything for granted and wish upon the milestones we have not accomplished yet.  And if they never do, we can’t say we didn’t try.  I chose to become a member of the Board because I want to be involved in something that I truly believe in.  I want more for our children.  And the only way to do it is to become involved in any aspect of the charity that you feel comfortable with.  I am glad for my decision.  So thank you for letting me serve.

Lauren Weissberg (2019-present): Board Member, Secretary

Lauren holds a BA in English Literature and an MA in Counseling Education, she works full time as a School Counselor at the high school level.  Lauren lives in New Jersey with her husband Marc and 3 amazing boys: Reid, Holden (Dup15q), and Jonas. The Weissberg’s Dup15q journey began in May 2016 when their second son, Holden, was diagnosed with Dup15q Syndrome.  Since receiving Holden’s diagnosis, Lauren has been determined to raise awareness about Dup15q Syndrome, as well as money for research, so that all of the impacted families can have something to hope for and believe in!  In September 2016, Lauren and Marc hosted the “Hope for Holden to benefit the Dup15q Alliance” event and raised over $10,000.  Due to the tremendous success of this fundraiser Hope For Holden is now an annual event.  In March 2017, was named the Outreach and Awareness Coordinator for the Alliance.  In this role, Lauren has been instrumental in utilizing social media to engage our families, promoting Dup15q awareness, and to help our extended support network understand what it means to raise a child with a rare disease. She helped to strengthen partnerships with organizations, helped designed programs for our families and extended network to help schools, therapists, and communities understand life with Dup15q Syndrome.  Parenting a “Duper” has taught Lauren to forget what "should be done" and appreciate every accomplishment that Holden makes, to never underestimate Holden and what he is capable of, and to celebrate every victory. As a member of the Board, Lauren will work hard to raise awareness about Dup15q Syndrome and money for research, as she strongly believes there will be a treatment for all of the Dup15q children in the not too distant future.

FORMER BOARD OF DIRECTORS MEMBERS 

Tom Doyle, Board Chair (-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.

 

 

 

Jane Kim, MD (-2018): Board Member, Professional Advisory Board Member

I am the parent of a 4 year old boy with Dup15q syndrome.  I am also a practicing adult neurologist with Kaiser Permanente in Northern California.  I help with the management and operations of the Dup15q clinical network. When my son was first diagnosed, the Dup15q Alliance was the main place where I was able to find information about Dup15q syndrome and connect with other families.  I wanted to be part of the Dup15q Alliance board because I believe in its mission and want to help the Alliance grow and thrive.  I wanted to use my medical knowledge and background as a neurologist to help.  I have the unique perspective of being both a clinician and a parent.  There is still a lot we don't know about Dup15q syndrome, including the natural history and best treatments.  The more we learn, the more it will help my son and others with his same condition.  My son inspires me.  He has significant delays but he still has a smile on his face most days and tries his best.  He has intractable epilepsy and his life is not always easy.  He teaches me that no matter how hard life can be, you have to keep going and make the best of things.  The Dup15q clinicians also inspire me.  They are dedicated and committed to helping our kids.  They are always looking for new research ideas and ways to improve care.  Most importantly, they show so much compassion and touch the lives of our kids and their families in more ways than they know.   I enjoy traveling when I can, trying new restaurants and being outdoors.