1. How did you get involved with the Network?
In April 2016, we were in the process of trying to determine a diagnosis for my daughter. I was told that she was wasting phosphorus but could not have XLH because only males could get XLH. My sister and I spent days and hours researching all the phosphorus-wasting conditions, and my sister sent me the link to the XLH network. I signed up in hopes to learn more about phosphorus wasting conditions and to meet others with a similar condition. I was immediately contacted by a board member who promptly informed me that girls could have XLH as she was a female with XLH. From that day forward, I was in contact with many members of The XLH Network, Inc., who answered many question and helped me find a doctor to treat my daughter. Since being treated, my daughter's legs have straightened, her pain has lessened, and she is able to live a life similar to her peers where the sky is the limit. I owe a lot to the Network and sought opportunities to get involved with the Network to help others in the future, which has included working with the Fundraising Committee.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I am a problem-solver who likes to analyze and find resolutions to issues. I would like to bring my background in politics and law to the Board to help assist the Network with advocacy for members.
3. What XLH project are you working on now that you're particularly enthusiastic about?
I would like to assist with expanding patient networks and work on ways to help Network members advocate for themselves. Those with XLH (and related hypophosphatemias) and their families have to advocate for themselves with healthcare providers, insurance companies, government assistance programs, and in many other areas. I also hope to work to expand the resources available to members of the Network.