A Story of Hope

I would like to share a story of my family with you. It is a story of building hope out of a sad event. Two years ago this June my husband, George, died of a rare plasma cell disease called amyloidosis. This disease is rare, not well known and very difficult to diagnose. The only treatment offering any success is for patients to undergo high dose chemotherapy followed by a stem cell transplant. Once we suspected that George was suffering from this disease we found a hematologist, Dr. Raymond Comenzo specializing in the study and treatment of amyloidosis at Memorial Sloan-Kettering Cancer Center. Dr. Comenzo is a wonderful doctor and was able to confirm the diagnosis so George could begin treatment. We knew going into it there was much risk and unfortunately, because the disease had affected George's heart, he was not strong enough to survive. This is too often the story for victims of this disease.

George was just short of 49 when he died, we were married for 22 years and have twin daughters who are now 19 years old, going into their sophomore year of college. Our lives have gone on despite our loss and George would be very proud of the accomplishments of his two girls. Our friends and family have been wonderful supports to us in rebuilding our lives. My brother Mark Scully chose to run in November 2004 in the NYC Marathon as part of MSKCC Fred's Team in memory of George. His time was 4 hours 29 minutes, a very good time for a "rookie"! Running as part of Fred's Team means raising funds to support research at MSKCC. We were very successful in 2004, raising $20,000 towards a specific clinical trial being overseen by physicians at MSKCC that evaluates a new diagnostic method for patients suspected of having cardiac amyloid. Patient enrollment may begin this fall and we are very excited to see the progress that has been made.

Mark has decided to run again in this year's Marathon under the Fred's Team banner. I am very proud of him and very excited to see what we can do this time. His running goal is to break 4 hours. We are hoping to meet the $20,000 fund raising goal again, maybe even exceed it. The cost of research is high and this disease is so painful and more often than not, fatal, for those afflicted with it. Mark and I work together on this to try to bring some meaning and purpose to George's death as well as have some hand in promoting the research that will bring better answers to those suffering. Funds we raise will again be targeted to Dr. Comenzo to support new and ongoing research into this disease.

YOU CAN HELP!!!!

• Buy an orange wristband: Imagine A World Without Cancer, Running for Grete Waitz for $5 and show your support for advancing research into finding new diagnostic tools, new therapies and ultimately cures. I have the wristbands right here at my desk!
• Please consider making a donation sponsoring Mark's run! Here's how:
• For online donations: You can go direct to the Fred's Team website: www.mskcc.org/fredsteam and find Mark's web page. Explore his webpage, read his story and follow the directions there.
• For donations by check: I have forms at my desk or you can access the form at the Fred's Team website noted above.
• Want more information? I have brochures about Fred's Team here. I also have more information about amyloidosis, should you want to learn more about this disease. Just let me know! There are also great websites to educate people about the disease and, importantly be a resource to patients and their families. These are:
• Amyloidosis Support Network: www.amyloidosis.org
• Amyloidosis Research Foundation: www.amyloidosisresearchfoundation.org

Thank you in advance for taking the time to read this and for considering supporting Mark's efforts. If you are able to make a donation, thank you from the bottom of my heart. A big part of my purpose is awareness raising & education about this disease so, please feel free to talk to me about the disease and treatments anytime. If you have any other questions, please stop by