Mission -- The Children’s PSC Foundation exists to seek a cause, expedite a treatment and ultimately find the cure for Primary Sclerosing Cholangitis (PSC).
Purpose -- Funds raised through the CPSCF will be used for research to find treatments and possibly the cure for PSC.
The CPSCF desires to increase awareness of clinical trials and basic research for both the public at large and families afflicted by PSC using a website, brochures and other materials.
The CPSCF seeks to provide education and support to patients and their families who have been diagnosed with PSC from pre-diagnosis through all stages of the disease.
The Children’s PSC Foundation was born of hope-- hope found in twenty-five children, one amazing trial, and a team of researchers who believed that a cure was possible in our lifetime.
Primary Sclerosing Cholangitis (PSC) is a progressive disease that damages the bile ducts and liver, ultimately leading to the need for a liver transplant.
Many children suffer from PSC. Most of them also have symptoms of inflammatory bowel disease, that include Crohn’s and/or Ulcerative Colitis. The progression of the disease is inconsistent, differing from child to child. However, each child’s story may ultimately lead to the same conclusion: The need for a liver transplant.
Currently, there is no consensus on a treatment plan that can halt this staggering march towards a transplant. Children battling PSC have few options. Drugs offered simply bring relief to the symptoms of a failing liver; a liver transplant is the only known “cure.” And even with a new liver, the disease may begin anew. The randomness of results leaves families discouraged, their children victims of this disease.
Remarkably though – and for the first time – there are 25 children experiencing consistent and profound symptomatic and clinical relief as participants in a Stanford/Sutter trial. When diagnosed in the early stages of PSC, children have consistently responded to the treatment, oral vancomycin, with the same incredible response: a normal liver enzyme reading and a complete halt of the progression towards a liver transplant. This experience is evidence of how new advances in therapy may lead to effective treatments or possibly the cure for PSC.
For parents, families, and friends there is nothing more devastating than a child diagnosed with a life-threatening condition. Fortunately, the results these children are experiencing have given us a reason to believe that a treatment - and even a cure- are possible. Add to that, the gastroenterologists, microbiologists, and immunologists who are confident that a cure is near… and we have our reason to hope.
The Children’s PSC Foundation is dedicated to funding promising scientific research in pursuit of this cure and to bringing hope to the many children suffering with PSC.
We welcome you on our journey towards the cure, and thank you for supporting us in our endeavors.
The Children’s PSC Foundation