Greetings to our Dup15q families and friends!
Lisa Feehery and I are both honored and excited to be taking on the leadership of the Alliance Board as Co-chairs. It’s a new idea to share the responsibility of leading the board, but as mothers of a teenager (Lisa’s son Gavin) and an adult (Anne’s daughter Rachel), we know that the needs of our children sometimes take a sudden turn and upend our lives. You all know that too! It’ll take two of us to fill departing board chair David Gifford’s shoes.
We will work together daily, and we hope that we will be able to step in for each other when needed, so that the Alliance can move forward without any hitches, despite what might be happening in our family lives. Between us we have 52 years of experience of “life with extra,” as we sometimes call having a family member with Dup15q. We look forward to talking with you on Zoom calls and meeting/reuniting with you at the Family Conference in Nashville in July.
Let us introduce ourselves:
Lisa: I received the call with Gavin’s genetic microarray results during summer vacation whilst implementing an intensive, every-8-minute, ABA potty training protocol. The developmental pediatrician was almost giddy in her bedside manner: “We almost never get to know the cause of a patient’s autism!” She hung up and then called back five minutes later. “The Dup15q Alliance, which is the organization for Gavin’s disorder, is having their conference right here in Philadelphia tomorrow. You need to go.” Four kids home! My husband on an Asian business trip! My mother in law recovering from surgery! A persistent BCBA! It was impossible. I somehow managed to show up like a deer in the headlights, and felt both overwhelmed and warmly welcomed. After that first Conference, I was driven to do everything I could to help our child and others like him: participated in the registry (now LADDER), went to a clinic, participated in all the research studies, donated money, did intake calls as a Regional Rep, presented at Family Conferences, attended Science Symposiums, and joined Dup15q Alliance committees. Then I joined the Board and spearheaded the IEP/Education Committee where we created a handbook and provided an IEP help ticket to support families. I am optimistic about the future of targeted therapeutics to cure some of the symptoms of Dup15q syndrome, which will only come to pass with a lot more fundraising, advocacy, relationships with pharma, and parent participation in our LADDER database.
As for my background, I grew up in the Midwest and have lived on both coasts and abroad. I accumulated degrees from Stanford University, Harvard Law School, and MIT Sloan School of Business (my grandma used to tease m