The XLH
Network is at a watershed moment, where for the first time ever, there's hope
for an effective treatment for both children and adults with XLH within the
next five years.
The
Network's mission involves education, awareness, and support for the XLH
community. Until recently, with no hope
for more effective therapies, we've been primarily focused on providing support
for our members through the listserv and a website that provides the most
current information on XLH, diagnosis, treatment, and ongoing research.
While
our mission remains the same, we have much more work to do today given the
explosion of research into bone metabolism and FGF23. It's more important than
ever to reach out to everyone diagnosed with XLH and everyone who might diagnose
a patient with XLH.
We can't
embrace these new challenges without funding.
2015
must be a year for securing our stability. This year, we raised a fair amount
of money from our member donors, the International Society of Pharmaceutical
Engineering, and Ultragenyx Pharmaceutical, Inc./Kyowa Hakko Kirin Co., Ltd. Some
of the money raised in 2014 was invested in a strategic planning weekend to set
goals for our future work, and grant money specifically supported exhibiting
XLH information at medical conferences. The remainder of the money was
earmarked for two XLH Days (one in Indiana in a few days and another on the
west coast in 2015).
This one
year's infusion of money won't last forever, though, and if we want to continue
offering our services to an ever-growing membership, we need your help. We work
as a virtual organization dependent on hours of volunteer time given by our
board. This must change. We need your financial support so we can keep pace
with the growing demands of our membership by moving forward with professional
staff. A little or a lot, whatever you can contribute would be greatly
appreciated.
Thank
you to each one that donated last year. If you have not donated before, please
donate this year. Every donation counts. Help us serve adults and children with
XLH everywhere. We can't do it without you!
Sincerely,
Becky
Mock, President
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