1. How did you get involved with the Network?
Shortly after I got my first internet connection back in the 90s, I searched for anything to do with XLH. I found the old listserv and joined immediately, but I stayed on the fringes, not participating much. Up until then I had spent my whole life dealing with XLH on my own (I'm a spontaneous case), and it was almost overwhelming at first to hear other people's stories. It wasn't until the first XLH Day on the West Coast in 2015 that I decided to jump in and become an active member. That day changed my life in a lot of positive ways.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I think my superpower is my perspective as both an XLHer and a mental health professional. As a licensed therapist, I have spent my career working with children and families, in everything from medical settings to community-based mental health to private practice to trauma/crisis debriefing. My personal and professional experience combine to give me some insight in to the social/emotional development of children with XLH and the possible challenges they and their families might face. I hope to be able to find a way for the Network to support families more in this area as well as in all the other important issues faced by families living with XLH.
I've also got "oodles" of experience in large event planning, so I'm hoping to get involved in planning upcoming Network events! Finally, my colleagues would probably tell you that I have a way of bringing compassion and humor to the table, as well as a drive to cut through red tape and get things done.
3. What XLH project are you working on now that you're particularly enthusiastic about?
There are so many I am excited about! If I had to narrow it down, my passions include education and advocacy. Education for medical professionals and advocacy for patients. With the possibility of new treatment options on the horizon, I'd like to be able to help increase the number of doctors who are familiar with XLH and are willing to do the work necessary to treat it. I'd also like to find a way to reach those XLHers who might be shy about getting involved with the Network (like I was!) and help them access the tools and resources available to advocate for themselves in the medical arena.
As an adult with XLH, I'm encouraged by the work the Network has been doing to address the issues of adults with XLH and I am looking forward to becoming an advocate for the specific challenges of being an adult with XLH in this era, almost as much as I am looking forward to watching a new generation of XLHers grow up with greater access to treatment and fewer complications in later life. THAT is what excites me the most about being involved with this organization…the hope for the next generation.