2017 – A Year of Change and Growth


By: Tom Doyle, Dup15q Alliance Board Chair, 2017 Dup15q Alliance Board Report

It is truly humbling and an honor to be the chair of your Dup15q Alliance Board.  It has been an awesome experience to watch the development and growth of our organization, especially over the last year.

We have been blessed with inspirational leaders throughout our 20-year history, beginning with co-founders Donna Bennett and Brenda Finucane.  I always worry when naming people that I could miss someone (and I’ll apologize in advance), but we could not have had better people than Nicole Cleary and Kadi Luchsinger as our former executive directors, leading us through the initial growth phases of an all-volunteer, family organization.  We continue to be blessed with courageous, dedicated men and women who put service above self.

This past year, Kadi retired from her position and the board performed a nationwide search, reviewed more than seventy applications, held phone interviews and final in-person interviews and selected a wonderful candidate, Vanessa Vogel-Farley, as our first full-time executive director.  We just completed our end-of-the-year performance evaluation with her and, I think you would agree, she has done a great job with the transition and will be a great leader for us.

The year has seen the transition from one executive director to another, positive and dramatic changes in our financial reporting and fiduciary responsibilities, an exciting family conference in LA, strengthening of our clinics and clinical databases, building bridges with our international sister organizations, focusing on our family support through the website, Mirror, and social media, developing relationships with scientists, advisors, doctors, other similar organizations, and pharmaceutical companies, and so much more.  It has been a whirlwind of activity for us.  The board is grateful to Vanessa for all her work, to our advisors for their committed, loving direction, to all the volunteers and family members who contribute in so many ways.

Your board is committed to growing our organization, making it sustainable, providing family support, promoting awareness, and continuing to work towards developing research and targeted treatments.  

How can you help? We need volunteers on our committees.  We need people who are interested and committed who might like to serve as board members.  We need your participation in the registry and other database, natural history studies.  We need your financial commitment to support what we do.   As we go out into the medical and research communities and ask for help or funds, we are always asked what percentage of our board and what percentage of our membership actually contributes to our organization.  We have so many of you who so generously sacrifice your time, talent, and treasure that it is easy to talk about your love and generosity.  For those who have not been able to help so far, an annual contribution of any amount would demonstrate our families’ commitment.  Outside donors or organizations look at percentage of our families donating rather than the amounts.  Help us by making a contribution, even a small one, to help us show others how committed we all are to improving the lives of those affected by dup15q syndrome.

Thank you for all you do to help us fulfill our mission.