As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born. At that time very little was known about the care of a child with MSUD, especially during times of illnesses. I clearly remember on one of our many hurried trips to Children’s Hospital in Philadelphia, Dr. Marc Yudcoff commented that maybe not in Mary K or my lifetime but surely in Keith’s lifetime there would be a cure for MSUD.
Now, almost 40 years later, I believe we are on the
brink of seeing a cure for MSUD. The medical field is
moving rapidly, with more frequent articles in the
medical journals describing gene therapy and other
therapies with the potential to correct different
disorders. I believe a cure for MSUD is not far behind.
As a Board, we are concentrating our efforts and
resources on raising funds which will allow us
to sponsor research projects looking for better
treatment and ultimately a cure. Let’s not lose hope
but continue looking forward to the day when
special diets will no longer be necessary. Just
thinking about that is very exciting!
Along with fundraising, our aim to support research
means we need more volunteer help. You will see
more calls for volunteers to help out with these
projects. A special thank you to Susan Needleman
for agreeing to contact clinics and medical centers
with the express purpose of looking for MSUD
families who may not know about the MSUD Family
Just a reminder: If you are planning to attend the
symposium, don’t forget to register. I hope to see
many of you there. It’s always good to reconnect
with friends and create new acquaintances. I expect
to hear much valuable information on a variety of
potential therapies. See you in Pittsburgh on the
28th – 30th of June.
From The Chairman’s Desk
- Written by Administrator