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 me: “If you’re so smart, why haven’t you graduated?”). My husband Bill and I have been blessed with four children, Liam (23), Michaela (21), Erica (19) and Gavin (16). Our family is super active and we travel a lot. I ended my professional life as a strategic consultant (at Boston Consulting Group and various financial/tech companies) long ago to be a full time mom and Gavin’s case manager to manage all his therapies and doctor appointments. Over the years, I have volunteered to help nonprofits with strategy (including Junior League, SB County Commission for Human Services, schools and FRC Robotics teams) and have helped families with educational advocacy. I hope that my skills will help the Alliance grow and navigate its triple mission to support families, provide advocacy, and further research and therapeutic development. And I hope to meet you all at this summer’s conference!
Anne: My husband Paul and I have three adult children and (joy!) a granddaughter, with another one on the way this spring. Rachel (Dup15q) is our oldest. She is 36, so we have been caring for her and living and learning “life with extra” for over half our lives. That makes us old, perhaps the age of many of your Dupers’ grandparents, but it also makes us experienced and, we hope, gives us perspective: we remember life before the Alliance, before IDEAS, even.
I was a reading specialist before I retired and earned a PhD in education just before I turned 60. I am passionate about education for all children, but also for adults, especially parent empowerment through education.
I am the organizer and trainer of all of Rachel’s caregivers (she currently has a team of 10 who support her living in her own place just 9 blocks away from our home in Madison, Wisconsin). In addition to the time I give to serving on the Alliance board, I also serve on the board of two local agencies in Madison, one that promotes adult literacy and one that supports adults with intellectual disabilities living inclusive lives. I am very active in fundraising and community building at our church, a place that has always been welcoming to Rachel. I hope that my organizing skills and my knowledge of how to help adults learn will be assets to my co-leadership.
And let us tell you what we hope to work on with the board and our wonderful Executive Director Carrie Howell in the coming year:
- A comprehensive strategic plan for the work of the Alliance, including support and outreach to our families and extended families, and an exciting plan for science and research.
- Encouraging and supporting community building among our families and extended family members through our drop in Zoom calls, regional gatherings and Believe Walks.
- Promoting some exciting fundraising opportunities to help us reach beyond our families for the money we will need to support the Alliance’s support to families, best practices at clinics, and the exciting science and research opportunities that are right up ahead.
- Education for our board members about leading and governing a non-profit organization, so that we can do a great job supporting Carrie and the Alliance staff.