Tuesday, April 21, 2009

Running for NF!

I made the announcement a few posts back that I would be running with the NF Endurance Team for the Twin Cities Marathon. Well, I officially have my fundraising page up and running. Take the time to check it out at

The NF Endurance team raises money for Neurofibromatosis, a genetic disorder that causes tumors to grow on nerves in the body. Here is a bit about my story but you can read further on my fundraising website.

Why am I raising funds for NF?

For my namesake and my uncle and all the others who are struggling with the disorder. My grandmother, Rachel Sterne, was a very sweet woman. David was her youngest of seven children. They were in a car accident right around the time that I was born. My grandmother was thrown from the vehicle and severely injured. She was in a coma for months. The doctors said that she would not survive, they wanted to pull the plug on her. But my family would not let them and my grandmother regained her ability to walk, talk, and become a great grandmother for her many, many grandchildren. David came out alright, minus one small thing.

It was believed that the stress of the accident had flared up a disorder in his body --Neurofibromatosis. My grandmother had it as well. I was just a toddler when it occured--but I've seen the pictures of my cousins and I going to the hospital to visit David. Tumors flared up in his body. He was put on Chemotherapy. He had always been the jokester, the youngest sibling. His struggle with the disorder took his life before I got to know him in his life. But I do still know him--I know about the grin he had on his face as a kid by looking at the pictures. I know about the tears that my mother sheds when she talks about her little brother. I know about the sobs that come from my aunt's throats when they talk about their memories with him. I know about the love that his mother and father had for him. My grandmother, Rachel, loved her grandchildren dearly. While I lived many miles away, she was always excited to see me when I visited. She would tell me about how my name had been passed down through many generations. She fixed zucchini bread on special occasions and spent hours in the kitchen on Thanksgiving Day fixing her famous casseroles. However, she also had NF. She, too, had tumors inside her body. I was in the 5th grade when she went to the hospital one last time. It was right before Christmas. My mother had sent my brother, Jeremy, and I back home after a week long visit with her. She had come home shortly after. She got a phone call from her sisters that night. My grandmother had acquired pnuemonia in the hospital. She didn't want to be treated anymore. She told my mother on the phone that night, "David is in the parking lot waiting for me." A few hours later, she passed away. My grandmother had gone to be with her youngest son. My family members had bad cases of NF, but any case can change a person's life.

What is Neurofibromatosis?
It is a genetic disorder that causes tumors to grow on the nerves. NF is one of the most common genetic disorders in the United States and affects all races and ethnic groups and both sexes. You can read more about it at http://www.ctf.org/ and find out where donations go.


nwgdc said...

Wonderful! I'm excited!

Irish Cream said...

I am so impressed with you and your amazing fundraising abilities! I am just terrified of taking on any kind of fundraising . . . some day I'm going to force myself to do it! Anyway, thanks for sharing your family's story, Rachel. This is indeed a great cause.

EmLit said...

Thank you for sharing your story, Rachel. It is really touching to read about your personal connection to this cause. I hope you are able to raise the money you need to meet your goal! I know you can do it :)