The following message is from Holly Tillman and then her mom. They asked to post the following message. Good Luck Holly and Karen!
Dear Freinds, Family, and HPS Network community, I am involved in a fundraising event to benefit the community of local nonprofit organizations by getting sponsors through a single donation. The organization I have chosen is the Hermansky Pudlak Syndrome (HPS) Network because my mother has this serious illness, and quite frankly I would like to find a cure or a way to help my mother deal with symptoms. HPS causes albinism, a visual impairment, a platelet dysfunction with prolonged bleeding, and progressive symptoms include pulmonary fibrosis a terminal lung disease, Crohn's Disease, and kidney disease. My mother is having to deal with all but the kidney disease on a daily basis. 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. My mother is 43 and is in the early stages of pulmonary fibrosis, so you can see why this issue is so dear to my heart. If you'd like to make a donation, please make checks payable to The Human Race, and write HPS Network in the memo line, then send it to Holly Tillman at 4114 Landerwood Dr. Greensboro, NC 27405. Please have this sent to me by March 10th 2008. If you would like to walk or run for the HPS Network, give my mom a call (she is regional coordinator here in Greensboro) at 336 954 3604. The race is to be held at Grimsley High School on Sat. March 15th. from 9am-noon. Refreshments and entertainment will be provided. The event is sponsored by the Volunteer Center of Greensboro. All contributions are tax deductible.
Many thanks in Advance
Many thanks in Advance
Holly Tillman
From Karen:
While this means a lot to Holly, it means so much more for me as i am fighting for my life, and for the lives of those in the HPS community. I was told 6 years ago that I would either be on oxygen, or dead by now, and God has seen to it that I have beat the odds!! i am so grateful to Him and modern technology. Without funding the HPS Network, research cannot continue, nor can we continue to inform people about this rare disease. On that note, I too thank you from the bottom of my lungs!
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