Thank you for visiting my fundraising page!
I will be running the Mount Desert Island Marathon in Acadia National Park, Maine, on October 20, to help raise funds to support the ARPKD/CHF Alliance.
My daughter Jade was born with ARPKD/CHF - Autosomal Recessive Polycystic Kidney disease and Congenital Hepatic Fibrosis. This is a rare chronic, progressive disease affecting primarily the kidneys and liver. There is currently no treatment or cure. Many children born with this disease do not live past infancy. For those who do survive, lilke Jade, they face many challenges. Jade will likely need a kidney transplant before adulthood, and will probably need a liver shunt or transplant in the future due to high pressure within the portal vein. There has been a lot of progress recently with PKD research, and my hope is that we can find treatment soon so Jade and other ARPKD kids/adults can live a full, happy life.
To read more about Jade's story, go to http://caringbridge.org/visit/jade
To learn more about ARPKD/CHF, please visit http://www.arpkdchf.org.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support!