Meet Director Joyce Inman

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

My daughter was diagnosed with a spontaneous case of XLH when she was two years old.  My research led to the Network, and I was overwhelmed with how meaningful it was to talk with other families dealing with this disease.  I felt  alone, and I had a lot of questions.  In addition, I live in a state that only has two pediatric endocrinologists, and they are affiliated with the medical school that is two hours from our home.  I needed help figuring out how to get my daughter effective treatment, and my correspondence with both board members and listserv members assisted me in doing that.  One of my favorite memories involves a member in Canada who emailed me after I posted a question about my daughter's abscesses.  We began sending each other pictures of our children with their smiles that included very few teeth.  Her son had never seen someone else with XLH and neither had my daughter.  Even at a young age, I think they felt better knowing that they were not by themselves on this journey. 

I joined the board after having only been affiliated with the Network for about a year.  I wanted to try and help others who found themselves in the same situation.

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

I do not think that I have any super powers, and I am so busy at this stage in life that there are a number of super powers I wish I had!  I am an assistant professor of English and a university administrator, and my job requires that I work with all types of students, colleagues, and community members.  I find that this allows one to be a good listener and diplomat.  I would say that these are skills that are especially helpful when working with an organization such as ours.  In addition, I am an educator.  I now see my own life's mission as educating others about XLH—my teaching is not just about writing anymore.

What XLH project are you working on now that you're particularly enthusiastic about?

I think our new communications efforts are something about which we need to be especially proud.  We are doing so many things behind the scenes—attending important medical conferences, consulting with pharma companies and medical professionals, creating new materials for patients—and I am excited to see that we now have a venue for publicizing this work to our members!