Press Release - Congratulations Ricky and PSC Partners Seeking a Cure

[Guest guest]

http://www.pscfoundation.com/press.html

PRESS: Foundation receives grant to further study of PSC

The Musette and , Jr. Foundation for the Study of Primary

Sclerosing Cholangitis (PSC), headquartered at Le Bonheur Children's

Medical Center (www.pscfoundation.org), recently received a $20,000

contribution from PSC Partners Seeking a Cure (www.pscpartners.org).

PSC Partners Seeking a Cure is a national PSC patient support

organization founded in 2005 to raise funds to research the causes

and cure for PSC, promote PSC and organ donation awareness and

provide education and support to PSC patients and their families.

The funds will be used to support the Foundation's STOPSC

(Studies of Primary Sclerosing Cholangitis) registry, which will

include clinical information on children and adults with PSC,

autoimmune hepatitis and PSC/autoimmune hepatitis overlap syndrome.

The registry will house a database of information, tissue and DNA

samples, facilitating collaborative, hypothesis-driven, multi-center

research on this rare disease. Le Bonheur is one of 12 major North

American medical centers encompassing 18 pediatric and adult

hepatology programs participating in the registry. PSC Partners

Seeking a Cure has targeted their funding to support the DNA

repository. The registry is set to go online in early 2007.

Dr. Dennis Black, Co-Director of the Foundation, Le Bonheur

Vice President for Research and Director of the Children's Foundation

Research Center, expressed gratitude to PSC Partners Seeking a

Cure, " We are delighted that we have been able to forge a strong

collaborative relationship with PSC Partners Seeking a Cure. Our

respective organizations have a common goal to find a cure for this

devastating disease. We look forward to a synergistic relationship

and a cure for PSC. "

Ricky Safer of PSC Partners Seeking a Cure said, " We are ecstatic

that the Foundation has worked so hard to establish the STOPSC

registry, which brings us all many steps closer to finding a cure for

this disease. All our members are hopeful that together, we can

accomplish this goal. "

PSC is a rare disease that causes the bile ducts inside and outside

of the liver to become scarred, narrowed and eventually blocked.

Often the only effective treatment for this fatal disease is a liver

transplant. While children are waiting for a liver transplant, they

suffer with such symptoms as severe abdominal pain, jaundice, growth

failure and a profound lack of energy.

The Foundation, founded in 2004 by Musette and ,

Jr., sponsors and facilitates basic and clinical research to discover

new treatments and ultimately a cure for primary sclerosing

cholangitis.

ARCHIVED STORIES

The Foundation Forms PSC Registry

http://www.pscfoundation.com/pscregistry.html

NIH, Foundation Sponsor PSC Conference

http://www.pscfoundation.com/NIHConference.html

[Guest guest]

Hooray, thanks for posting Dave. I hope everyone will read this and feel some hope that we will have a better treatment for PSC in the next few years.This is what the Virtual Walk is all about folks. Let's keep working towards the common goal of beating PSC.My heart goes out to all of you, patients and caregivers dealing with this disease.Together in the fight, whatever it takes !Leehttp://www.pscfoundation.com/press.htmlPRESS: Foundation receives grant to further study of PSCThe Musette and , Jr. Foundation for the Study of Primary Sclerosing Cholangitis (PSC), headquartered at Le Bonheur Children's Medical Center (www.pscfoundation.org), recently received a $20,000 contribution from PSC Partners Seeking a Cure (www.pscpartners.org). PSC Partners Seeking a Cure is a national PSC patient support organization founded in 2005 to raise funds to research the causes and cure for PSC, promote PSC and organ donation awareness and provide education and support to PSC patients and their families.The funds will be used to support the Foundation's STOPSC (Studies of Primary Sclerosing Cholangitis) registry, which will include clinical information on children and adults with PSC, autoimmune hepatitis and PSC/autoimmune hepatitis overlap syndrome. The registry will house a database of information, tissue and DNA samples, facilitating collaborative, hypothesis-driven, multi-center research on this rare disease. Le Bonheur is one of 12 major North American medical centers encompassing 18 pediatric and adult hepatology programs participating in the registry. PSC Partners Seeking a Cure has targeted their funding to support the DNA repository. The registry is set to go online in early 2007.