BENEFITING: Scleroderma Foundation
EVENT DATE: Jul 10, 2016
Hello Friends and Family: I just signed up to do VINEMAN 70.3 in July 2016 and I want to make my IRONMAN journey about something more than my racing goals. That is why I have partnered with IRONMAN to help raise over $1,000 for an amazing cause that I'm incredibly passionate about, the SCLERODERMA RESEARCH FOUNDATION, and I need your help. It only takes a second to donate. As many of you know, this is a very personal cause for me. In 2007, my wife Tina was diagnosed with scleroderma. At the time we had no clue of the seriousness of this diagnosis or that our lives would soon take an unfortunate turn. In 2010, I watched in horror as my seemingly-healthy wife went from 125 pounds to 95 pounds almost overnight. She was unable to eat or drink, and had to rely on total parenteral nutrition (intravenous nutrition) for survival for 11 months. She spent much of this time in the hospital undergoing 3 long and difficult intestinal surgeries. Thankfully she is now on the mend, and after recovering her health, we were even miraculously blessed with twins. Unfortunately, like all of those suffering with scleroderma, Tina is not in the clear. There is NO WAY TO PREVENT scleroderma and there is NO CURE for the disease. Treatments are available for some, but not all of the most serious complications of the disease. In addition, some of the drugs currently in use can have serious side effects. Clearly, there is much work that remains to be done. Despite the number of people affected by scleroderma and the devastating effect the disease can have, scleroderma research remains critically underfunded by the National Institutes of Health. Contributions made to the Scleroderma Research Foundation support promising exploratory projects as well as innovative research studies that may provide the basis for longer term investment by federal research funding programs. Until new therapies are made possible by advances in medical research, people living with scleroderma continue to have hope, knowing that scientists are working every day on their behalf, and that this cause is being funded by the generosity and support of people like you! You're the best and thanks so much for your support. Sincerely, -Joe Dieber P.S. If you’d like to learn more about the disease (because knowledge is power), here you go: The word “scleroderma” is Greek for hard skin, the most visible characteristic of the disease. In fact, scleroderma is much more than this; chronic, complex and debilitating, it often affects the internal organs with life-threatening consequences. Depending on the subtype of illness, scleroderma can damage the lungs, kidneys and gastrointestinal tract with grave results. Peripheral vasculature damage due to scleroderma can result in loss of digits or limbs. In some cases, the joints and muscles are affected, resulting in a loss of mobility. The symptoms and severity of scleroderma vary from one person to another and the course of the disease is often unpredictable. The number of women affected with scleroderma is disproportionately high with some estimates suggesting as many as four out of every five patients being female. The disease most often strikes between the ages of 20 and 50; however, children and those above age 50 across all ethnic groups are also affected.