Meet Director Rachael Jones

The Network is pleased to announce that a new director has joined the board: Rachael Jones (no relation to Gin). Some of you may have met her at an XLH Day event, since she's been a huge help, particularly with respect to the children's activities at the last two XLH Days.

For those who haven't met her yet (or who want to know more), here's a bit about Rachael, in her own words:

1. How did you get involved with the XLH Network, and then how did  you become a member of the Board of Directors? 

I first found out about the XLH Network a month after I gave birth to our second child. I was searching on the internet for any information that would help guide us in the medical decisions we needed to make for our children, both of whom have XLH. In my research online, I was amazed to find the XLH Network, because growing up I was told that there was no information about XLH. I happened to find the Network a few weeks before the XLH Day in Connecticut, so my husband and I decided to attend last minute. I was amazed at the wealth of information that I received in one day! I wanted to get involved in any way I could, so I first served on committees, helped with a couple XLH Days, and applied for the Board so that I could continue to serve this wonderful organization.

2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?

I have experience fundraising and working for a non-profit. I am also an educator and administrator and bring the ability to create programs for children.


3. What XLH Network project are you particularly looking forward to working on? 

Since my first encounter with the Network was the XLH Day, that is what I continue to look forward to helping with. I also would like to help with any projects related to pregnancy and XLH. I discovered that there is very little information for pregnant women with XLH, related to the care that is necessary during pregnancy. I am done having my children, but I want to help other women with XLH have more information that they can share with their doctors, so that they can be better informed and receive the best care possible during their pregnancy.