This week, we've got an interview of Board Director Kathy Buchanan.
1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?
I had searched the internet years ago trying to find more information on XLH, though at that time I knew it as hypophosphatemic rickets. I didn't find very much, at least not anything helpful. Then when my son, who was diagnosed with XLH at age 3, was facing surgery while he was in college, the nurse suggested I look again. That's when I found the XLH Network. I immediately joined and was a member for about 4 years when Joan Reed and Joanne Joseph were trying to incorporate and form a board of directors. I applied for a position on the board and was at the very first board meeting in Syracuse, NY in March, 2005. I was elected Secretary of the Board of Directors and held that position for over 6 years. I was President for one year in 2012 and have been a member-at-large on the Board for the last 2 years.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I have worked with other non-profit organizations in the past in various leadership roles that helped prepare me for working on the XLH Board of Directors.
I am also a registered nurse and have worked with clinical research trials for over 20 years, though not with XLH. I am particularly interested in the clinical trials going on now for XLH, though, and find it thrilling to finally hope for some new treatment options for XLH that will be more effective and safe.
3. What XLH project are you working on now that you're particularly enthusiastic about?
Right now, I am the committee chair for the Bylaws committee and just completed a major revision to the bylaws after a review by lawyers in New York state where we are incorporated to make sure we are following all rules and guidelines set forth by the state.
I am also on the Membership committee and am in charge of new member subscriptions as well as member requests for referrals to physicians who have experience treating XLH patients. This keeps me quite busy, but also gives me the opportunity to speak one-on-one with our members from all over the world and get to know you all a little better. No matter where we live, we all face the same challenges in dealing with everyday life with XLH for ourselves and our children. The world becomes a little smaller when you can talk to someone in another country or even another continent who is dealing with the same issues you are! It is my hope that anyone dealing with XLH will do an internet search like I did (and probably like you did) and find the XLH Network, Inc.