It was only by chance that I learned that the disease that was common in my family, hypophosphatemic renal rickets was also called XLH and that there was a patient advocacy organization!
In 2003, I was looking for a doctor with experience treating hypophosphatemic renal rickets for my two teenage children. It was past due for them to transition from the pediatric nephrologists that had treated them for years to an adult endocrinologist. My doctor recommended they see a doctor with more training in growth issues and referred me to Dr. Thomas Weber at Duke Medical Center. I spoke to Amy Wright, Dr. Weber's nurse, inquiring about his experience with hypophosphatemic renal rickets. I mentioned that I had experience leading support groups and wanted to start one for XLH, but I couldn’t figure out how to find others with XLH. Amy asked if I knew about the XLH Network and gave me the website address. That random conversation helped me find the XLH Network. I signed up as a member that afternoon.
The XLH Network website offered a checklist of symptoms well known by my family. My father, I, both sisters, two children and a grandchild all have XLH. It was so helpful to learn how others dealt with our rare disease and to connect and share information.
In 2011, after I retired as program director at a local nonprofit organization, I learned that the Board needed new members. I joined the Board in 2012 and became President in 2013. It’s been an intense three years of work on behalf of everyone with XLH. Leading the XLH Network requires more time and effort than ever before by every person involved, Board members and volunteers alike. We are committed to doing whatever it takes to create a stronger Network, as the child and adult research holds promise of a treatment for XLH in the next few years. We have to move our organization to the next level of development if we are to adequately provide the support and services our members need.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I’m not afraid of hard work and as a seasoned advocate, I know how to make our case (lobby!) at the local, state and national level. I’ve visited Congress on behalf of XLH patients asking for an increase of funding for National Institute of Health research. I’ve had breakfast with North Carolina legislators with the NC Rare Disease Coalition, representing the XLH Network. The exhaustion from secondary hyperparathyroidism slows me down, but I’m still willing and able to put on my XLH Day button and talk to anyone that walks by the XLH Network at medical conferences across the USA. We have to do this outreach to raise awareness of XLH or we remain invisible to the majority of doctors and the public. I hope to train more volunteers this coming year to do this very important work.
3. What XLH Network project are you working on now that you're particularly enthusiastic about?
There are so many great projects going on within the Network right now, but I am most excited about moving from an all volunteer organization to one with a professional Executive Director to improve our ability to serve our membership. It’s an important part of growing our organization and an important benchmark of stability for the Network’s future.
NOTE: You can also read a newspaper article featuring Becky here: http://www.epaperedition.com/Olive/Tablet/BurlingtonTimes/SharedArticle.aspx?href=BUR%2F2015%2F05%2F26&id=Ar01102