Guest guest Posted August 29, 2008 Report Share Posted August 29, 2008 Dear Friends, Family, Etc, My name is Tillman, and I have Hermansky Pudlak Syndrome.What is HPS you ask? HPS causes albinism, a visual impairment, a platelet dysfunction with prolonged bleeding (sometimes mild to life threatening), and progressive symptoms include pulmonary fibrosis ( a terminal lung disease that causes severe scarring of the lungs), inflammatory bowel disease for example Crohn's Disease, and kidney disease.At the moment there is no cure for the disease, you can only treat the symptoms, and death occurs in patients with pulmonary fibrosis usually in their 30's and 40's. I am 44 years old, and have all the above symptoms except kidney disease, so you can see why this cause is so important, as I am fighting for my life and the lives of people who are very close to me.In my fight to find better treatments and one day a cure, I am collecting pop tops from soda, juice, soup, or any aluminum cans that you may have. My goal is to fill up a large rubbermaid moving container with them. This is an ongoing project, through March of 2009, but would like to see how many containers I can fill before then.Why pop tops from aluminum cans? They take up little room, and people can send them to you in the mail etc. Not only that, it is asking for a donation without having to ask for money.I ask that you please repost this to all your friends, blogs, etc, and mail your pop tops to Tillman, Regional Coordinator USA4114 Landerwood DrGreensboro, NC 27405If you have further questions please feel free to contact me at . You can also reach The HPS Network at 1 800 789 9HPS If you know me real well, then I can make arrangements to have my husband meet you and pick them up. Let me say thanks so much in advance, as I know all of you that can, will help. Sincerely, Tillman _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 Quote Link to comment Share on other sites More sharing options...
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