It's that time of year again. Every year the Tillman family leads a fundraising effort to benefit the HPS Network in cooperation with their local volunteer center. The volunteer center takes on the expense of organizing this rather large event, promoting it etc. Thus, they get 20 percent of the proceeds. The Tillmans reach out to their network of friends and family and ask for donations. The Network gets 80 percent of what they raise.
Below is a letter from Karen's daughter Holly. She's asked us to post it to our blogs, so here it is.
Dear Friends and Family,
I am involved in a fundraising event to benefit the community of local nonprofit organizations by getting sponsors through a single donation. Just like last year the organization I have chosen is the Hermansky Pudlak Syndrome (HPS) Network because my mother, Karen Tillman 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, inflammatory bowel disease(similar to Crohn's Disease), and kidney disease. I have underlined the disorders that my mom deals with on a daily basis. At the moment there is no cure for HPS, you can only treat the symptoms, and death occurs in patients with pulmonary fibrosis usually in their 30's and 40's. My mom is 44 years old, 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. Please make your donation by March 20th 2009, then mail it to Holly Tillman 4114 Landerwood Dr. Greensboro, NC 27405. If you would like to walk or run for the HPS Network, give my mom a call (she is regional coordinator for the network here in Greensboro) at 336 954 3604. The race is to be held at Grimsley High School on Sat. March 28th from 9am-noon.
Refreshments and entertainment will be provided. The event is sponsored by the Volunteer Center of Greensboro. All contributions are tax deductible and greatly appreciated.
With Sincere Gratitude
Holly Tillman
PS. I am so proud of my mom. This past year has been rather rocky for her. It started out with a scary hospitalization in February 2008, The medicine she was taking started poisoning her bloodstream,, and it caused her immune system to fail. On top of this her Crohn’s like symptoms reappeared, and caused her some real problems. Since then she has been put on a new rather expensive medicine called Humira, and was able to get help to pay for it. Although she has had several health setbacks, has been hospitalized, and is legally blind, she traveled to Toronto Canada, by herself, and met up with colleagues per the HPS Networks request, to help educate researchers at The American Thoracic Society’s Conference this past May. Mom is not only active with The HPS Network, but has just taken on the role of newsletter editor, and is now a member of the board of directors for Volunteer Services at Moses Cone Hospital.
Below is a letter from Karen's daughter Holly. She's asked us to post it to our blogs, so here it is.
Dear Friends and Family,
I am involved in a fundraising event to benefit the community of local nonprofit organizations by getting sponsors through a single donation. Just like last year the organization I have chosen is the Hermansky Pudlak Syndrome (HPS) Network because my mother, Karen Tillman 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, inflammatory bowel disease(similar to Crohn's Disease), and kidney disease. I have underlined the disorders that my mom deals with on a daily basis. At the moment there is no cure for HPS, you can only treat the symptoms, and death occurs in patients with pulmonary fibrosis usually in their 30's and 40's. My mom is 44 years old, 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. Please make your donation by March 20th 2009, then mail it to Holly Tillman 4114 Landerwood Dr. Greensboro, NC 27405. If you would like to walk or run for the HPS Network, give my mom a call (she is regional coordinator for the network here in Greensboro) at 336 954 3604. The race is to be held at Grimsley High School on Sat. March 28th from 9am-noon.
Refreshments and entertainment will be provided. The event is sponsored by the Volunteer Center of Greensboro. All contributions are tax deductible and greatly appreciated.
With Sincere Gratitude
Holly Tillman
PS. I am so proud of my mom. This past year has been rather rocky for her. It started out with a scary hospitalization in February 2008, The medicine she was taking started poisoning her bloodstream,, and it caused her immune system to fail. On top of this her Crohn’s like symptoms reappeared, and caused her some real problems. Since then she has been put on a new rather expensive medicine called Humira, and was able to get help to pay for it. Although she has had several health setbacks, has been hospitalized, and is legally blind, she traveled to Toronto Canada, by herself, and met up with colleagues per the HPS Networks request, to help educate researchers at The American Thoracic Society’s Conference this past May. Mom is not only active with The HPS Network, but has just taken on the role of newsletter editor, and is now a member of the board of directors for Volunteer Services at Moses Cone Hospital.
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