Letter On Research
Message
from Janalee Heinemann, MSW
Director of Research & Medical Affairs
Dear Family and Friends,
I want to welcome and thank all of you for
being a part of our 7th Annual Valentine’s Research
Fund Campaign. Your support will make a difference in the lives
of our children. To remind you why your efforts are so
important, I would like to quote one of our parents of a child
with Prader- Willi syndrome, Lisa Peters.
“I now realize that my life with
Nicholas will not be like the lives of so many
others.......ordinary.
It is an extraordinary life. A life
filled with high highs and low lows. I would not trade one day
of feeling that terrible pain because I know now the terrible
happiness that is on the other side waiting for me. What I have
learned is to appreciate both. For it is these feelings, this
blending of the good and the bad, that somehow seem to bring me
closer to understanding my purpose here on earth. …It is a sad
sweet beautiful trip. It is a life less perfect. It is a life
more meaningful.”
What you are doing is very, very
meaningful. It is helping us to find answers to this complex
syndrome and treatment options. I work every day with our
wonderful Scientific and Clinical Advisory boards which are
comprised of researchers who are internationally renowned for
their research on PWS. Virtually every major breakthrough in
PWS was by our PWSA (USA) scientists! They also mentor new
researchers in the field of PWS, and review outside grants for
their importance and quality. To further help assure the
research that we fund is not only of quality, but is also very
pertinent to the needs of our children, we have a research
committee consisting primarily of PWS parents who are
professionals. In 2008, thanks to previous efforts of the
Valentine Drive, we have been able to sponsor more research
grants than ever before in the history of our association. You
can help us to exceed that record in 2009!
At PWSA (USA) we have programs that educate
and support our families. It is the synchronicity of this real
people support and the dedication of our scientists that has
pulled the world of Prader-Willi syndrome from the darkness we
lived in when my son with PWS was young, to the new world of
hope, light and joy.
With your help, we can continue our search
for a cure. With your participation in the PWSA (USA)
Valentine’s Research Fund Campaign, we are getting closer to
that day when it is found. As Lisa states, we know that is our
purpose here on earth.
Learn more about PWS research efforts by
clicking here.
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