Our final new board member for 2018 is Kimberly Murray. She has XLH herself, as does her young daughter.
1. How did you get involved with the Network?
The "right" answer should be that I became involved because I have XLH. But the "real" answer is that I became involved when I found out I was pregnant in 2015! None of my doctors had ever treated an XLH patient, so when I became pregnant, I knew I needed to take matters into my own hands and find answers. After a simple internet search (something I should have done YEARS ago), I came across the Network. I immediately joined and started connecting with the members via the forum and social media platforms. It was the very first time I had ever talked to someone else with XLH. My daughter was diagnosed with XLH in June of 2016, and we (my husband included) attended our first XLH Day that August. From that point on, I knew the Network would come to be a big part of my life, and my daughter's.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
Oh boy this was a hard one to answer! I don't know if this qualifies as a superpower, but I'm a fighter. And I'm loud. I don't give up. And I make sure my representation is noticed when supporting or campaigning for a cause. I am hopeful that this energy I exude will have a profound positive impact in the lives of others within the XLH community, and help increase awareness of XLH as we move forward with the possibly life-changing events this year and thereafter.
3. What XLH project are you working on now that you're particularly enthusiastic about?
Honestly, helping out in any way I can! I think one of the most important issues is XLH education/awareness. Getting the resources and tools out there to patients, their families, their doctors, etc. I'd particularly like to see more names added to our database of doctors who have experience treating XLHers, and I'll be encouraging people with good doctors to share that information with us.
2018 is sure to be an exciting and possibly life-changing year for the XLH community. I look forward to being a part of the change that will hopefully make a huge difference in the lives of those fighting XLH!