About
TCH Foundation
The not-for-profit Thomas Cellini
Huntington’s Foundation was founded by two people who
have been profoundly affected by Huntington’s Disease,
Tom and Barbara Cellini. Tom first began to show
symptoms in 1986, before the disease was widely
acknowledged and understood. His own strength and
optimism, combined with Barbara’s determination to
explore ways to slow the progression of the disease,
have helped Tom immeasurably.
Their efforts to come to terms with the
magnitude of what they were facing enabled Tom and
Barbara to realize that many individuals and families
suffering with Huntington’s are ill-equipped or
completely unprepared to deal with this challenge. While
many lack the information, family support, and financial
resources to provide care for themselves or a loved one,
others do not realize that this congenital disease is
affecting their entire family or understand how it is
passed from generation to generation. Some families have
chosen to keep its existence private, oftentimes due to
a lack of organized support in the community.
The mission of the Thomas Cellini
Huntington’s Foundation is to provide a variety of
services and support to the Huntington’s Disease
community. These include providing home-based services
such as personal assistance, child care, housekeeping,
and transportation to medical appointments. The
Foundation also seeks to provide individuals and
families with educational materials and current research
studies in order to develop an understanding of the
risks and options involved in having children in
Huntington’s families. Additionally, we want to provide
a place where families and loved ones can come to share
their stories, and where caregivers can talk with others
who understand what they are experiencing.
The Foundation further seeks to help
provide access to affordable and private genetic testing
and treatment of the disease, as well as financial
assistance for these services to those in need. There
are many medical therapies, both traditional and
alternative, that can assist in delaying the progression
of Huntington’s. Unfortunately, many of these are not
covered by health insurance plans. Since the future of
Huntington’s Disease treatment may involve the actual
removal and replacement of the defective gene, storage
of stem cells from the healthy as well as the diagnosed
may play a large role in saving and improving the
quality of life of those affected in the future.
The Thomas Cellini Huntington’s
Foundation is unique. While many Huntington’s
organizations focus on the continuation of promising
research with regard to prevention and treatment of the
disease, we are focused on assisting the Huntington’s
community directly - your fathers, mothers, uncles,
aunts, cousins, neighbors, and friends. The two key
requirements for accomplishing this goal are
determination and financial support. The Foundation and
its members have an abundance of determination, but we
need your financial contributions to turn that
determination into the many practical ways that will
support those in our community who are facing this
debilitating disease. It is our hope that, with your
assistance, we can achieve all of our goals to help
Huntington’s patients and their families live with
dignity and peace of mind.
On
March 17, 2006, a fundraiser for the Thomas Cellini
Huntington's Foundation was held. Please click
HERE to read Barbara
Cellini's opening speech. |
