Cure Steven!

Cure VHL!
Cure kidney cancer!
Eat pancakes!

from Beverly A., Florida

Family and friends banded together to hold a Pancake Breakfast at Beef O’Brady’s Restaurant in Florida to benefit VHL Research. In particular, we wanted to show our love and support for Steven, my 18-year-old son, who was diagnosed at the age of sixteen, and has undergone two brain surgeries in the past two years.

Beef O’Brady’s is a Sports Bar, usually open only in the evenings. They opened on a weekend morning just for this event. I’ve done lots of fundraisers for worthy causes, and this was the easiest fundraiser one ever! The restaurant ran the kitchen, and the volunteers served pancakes, sausages, and drinks. We advertised in a local paper and rounded up all our friends. I sent lots of e-mails -- “come and be silly and eat pancakes with us. If you’ve ever played baseball with one of our children, come eat pancakes with us.”

We had a balloon guy, some guessing games, and a tattoo table (washable tattoos!) to add fun and spice. We tried out VHLFA’s new Frisbees. Dale and I made T-shirts for the servers to wear. The local newspaper interviewed Steven.

Altogether we raised more than $4400 for VHLFA!

And at the end of the day, though the numbers were wonderful, it wasn’t the numbers that mattered the most . . .

Inspiring

The best part of this day was having Steven take back a bit of the control that this disease tries to rob from him. The best part of the day was seeing all of the sweet people who are helping him do this.

Touching

Bottom line, Steven knows that he is doing all that he can to find a cure.

Empowering

Bottom line, he knows that he is very loved.

Amazing!

(And the numbers were pretty good too! And, of course, we’re very, very thankful for all of the donations and money raised through pancakes!)

What if

VHL were as well known as other rare diseases?

As I sit here at 2 a.m., reading through a local paper and noticing that a group of women, just a social group, managed to receive a huge donation from a bank for their fundraising project. Maybe people are more willing to donate big if they have had personal experience with the disease. Maybe it is easier to receive these sweet givings when the donor has actually heard about the disease that you’re fighting for.

 

Wouldn’t it be sweet

to receive a donation so huge that it would cover supplies for five pancake breakfasts?

What if

people actually realized that this fundraiser is not only for Steven and VHL, but also for most kidney cancer fighters?

really, as I sit here at 2 a.m., realizing that most people don’t know of the relationship between VHL and the cases of kidney cancer that are found in the general population.

Renal cell carcinoma is known as a “silent killer” in the world of cancer. It has so few and such vague symptoms, that by the time it is discovered, the cancer has often metastasized to various parts of the body. That coupled with the fact that there is not a reliable drug protocol to fight this form a cancer makes kidney cancer the seventh leading cause of cancer death.

The good and interesting news is that most cases of kidney cancer in the general population are caused by isolated. sporadic mutations of the VHL gene, the sort of mutations that tend to happen as we age or are exposed to environmental cancer risks. So...whatever cures VHL will also cure these random cases of kidney cancer. That is reason enough for VHL to come out of hiding and receive the sort of public recognition and financial assistance that other causes benefit from.

What if

each one of us did one thing each year to raise awareness of VHL and raise money for research?

As printed in the VHL Family Forum 15:3, September 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.