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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.

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