founded the Glanzmann’s Research Foundation, a
501(c)3 organization in 2001 after learning about the
research being done at the Medical College of Wisconsin
by Dr. David Wilcox. Wilcox’s work showed great
promise in finding a cure for Glanzmann’s Thrombasthenia
I’d learned from him that no amount of research
money was too small, I immediately started raising money
to assist him with his research.
date, over $200,000 has been donated by the Glanzmann’s
Dr. Wilcox has been able to correct GT in
his research lab by using gene manipulation. With additional
funding and public awareness GT can be cured in as little
as 10 years. This gene manipulation has also been successful
in correcting hemophilia as well as repairing red blood cell
that were damaged during chemotherapy.
I refuse to allow a lack of money and public
awareness to be the reason why my daughter, GT patients and
hemophilia patients around the world have to continue to live
with these terrible bleeding disorders.
I developed the Glanzmann’s Research
Foundation website in 2001 as a resource for myself and other
GT patients, family and healthcare providers because information
was difficult to find and other people with GT were even harder
to find, at the time I only knew of 4 other GT patients in
the world with whom I’d had contact with through email.
I thought a website would be a good way to share any and all
information I found with others and establish contact with
other GT patients.
Recently, I was honored by receiving the Jefferson
Award for Public Service. Presented on a national and local
level, the Jefferson Award was developed in 1972 to serve
as a Nobel Prize for public service. The prestigious award
was named for President Thomas Jefferson, whom the Board felt
“best reflected the spirit of excellence in America.”
The Jefferson Award’s Board of Selectors
chooses the winners every year. Past winners include Barbara
Bush, Colin Powell, Oprah Winfrey, Bill and Melinda Gates,
Dr. Condoleezza Rice, and Peyton Manning. A local panel of
judges in over 90 U.S. communities selects winners who are
grassroots “unsung heroes.” From each community,
the Board selects one local winner to be honored and represent
their community for the Jefferson Champion Award which is
awarded during the National Ceremonies in Washington DC every
am humbled by this award and feel somewhat embarrassed to
have been recognized in this way because the motivation for
my efforts originated with trying to help my daughter. Now
I’m committed to helping the entire GT (and hemophilia)
community and I’m hopeful that this amazing opportunity
will further my efforts to raise money for research and public
Julia’s fight with GT has become my
life’s work. I look forward to the day when there is
a cure for this debilitating disorder – when Julia and
other GT patients can no longer worry about a nosebleed, bruising,
or internal bleeding from even the least little bump or fall.
“Sometimes the phone rings at 2:00 a.m.,” she
said. “It’s exhausting, but if my child were bleeding
and might die, I hope someone would be there to answer my
phone call.” I’m here; ready to help whenever
and wherever I can.
continued support, Dr. Wilcox expects to be able to cure GT
within the next 10 to 15 years. Imagine being able to participate
in advancing medical science so far that GT becomes a footnote
in history alongside polio, scurvy, small pox and all the
other diseases and disorders we no longer live in fear of.
Glanzmann's Research Foundation