1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?
I'd been a member of the Network since 2002, and was an early financial donor to the organization. I started to think about volunteering for the Board after I attended a couple round-table discussions of XLH patients and Network officers at Yale. I'm afraid I missed the first deadline, but was elected to the Board early in 2012. After one year as an at-large Director, I was elected Vice-President for my second year on the Board, and then Treasurer that started at the beginning of this, my third year on the Board.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I bring the snacks to the in-person meetings! On a more substantive level, I've always been pretty good at finding common ground to create a clear path forward when discussions become heated and there is not full agreement on how to proceed. I try to pull from my considerable business and non-profit experience to contribute as best I can. I also understand what it's like to be experimented on. I've been participating in clinical trials since the age of ten, so I totally get that gig; including the excitement, apprehension, and disappointment.
3. What XLH project are you working on now that you're particularly enthusiastic about?
Something that came into particular focus for me at our recent Strategic Planning event was that in order to serve our membership properly, the Network can't continue to operate on a year-to-year shoestring budget. We need a predictable and sustainable financial base, so we can commit to projects that will benefit our members across a wide range of services, including advocacy, education, facilitating interaction with other members, arranging social events for both children and adults with XLH, and supporting medical research into our condition. The Board is looking forward to the day when, among other long-term goals, we can afford to hire an executive director to work full-time on behalf of the members, something that we, as volunteer board members, simply can't do. The only way to reach that goal is through donations from individuals, charitable foundations, and business entities, and I'm dedicated to helping the Network undertake that fundraising.