Happy New Year!!!
As President of the JSF&RCD, I am
looking forward to a healthy and productive new
year for our Foundation. As most of you know, my
health was in jeopardy for most of last year but
after 3 major surgeries, I am doing well and I’m
looking forward to getting back up to full speed
again. The Foundation’s Board of Directors will
be working this year on prioritizing our goals—
to keep us growing in the right direction. Our
direction and dedication is driven by all of
YOU!! We have come so far and yet we are still
so far away from realizing the bigger picture.
We have some good news for all
families struggling with Kidney issues. Please
see the letter from Melissa Parisi, MD, our
Scientific Chair, on page 6. At a meeting I
attending in New Orleans this past October, I
was fortunate to meet two doctors from NIH, Dr.
Meral Gunay and Dr. William Gahl. Dr. Gunal is
in charge of a research project with polycystic
kidneys and is very interested in our membership
and families that struggle with Kidney issues.
Dr. Parisi was more than happy to look into this
research project, and working together with Dr.
Gunay, she has given the Foundation her blessing
for participation in this study. This is a
wonderful opportunity to advance our knowledge
of the Kidney issues that are sometimes a part
of Joubert Syndrome and related cerebellar
disorders. Participating in the study will also
allow your child to receive top-quality medical
care and a better understanding of your child’s
condition.
The Conference Committee is
working on planning Conference 2008. During the
Spring, we will be evaluating the 2 location
choices suggested by our members—Atlanta or
Philadelphia. By the next newsletter, the
location should be determined, and the
information will be shared with our members.
That is all I have for now….
Please continue to check out our website for all
the newest information and ways you can help.