Pancake Breakfast Fundraiser

Just a few details

What a wonderful lunch we had today at Beef O'Bradys. The lunch was fantastic not only because it was spent with great friends, but also because Beefs is going to be the place of the fundraiser!

Beef O'Bradys
2561 E. S.R. 60
Valrico, Florida

We discussed so many details my head is spinning! But the most important topics to share are that the breakfast will start at 8 a.m. (I'm not sure that we discussed a finishing time, but Beefs needs to be ready to serve lunch at 11...) and the date is still August 11th.

I have also set up two ways for friends, both new and old, from far away to donate. We now have a p.o. box!

Beverly Angotti
P.O. Box 6702
Seffner, Florida
33583

I've also opened a fundraising page at First Giving. We used this page several years ago, and it works very well! It is now again live on the web and ready to take donations!

Money that is raised through this fundraiser will be used to fund medical research that will lead to a cure for this disease. Over the course of the past two years we have not to set up a medical fund for Steven. Most of Steven's medical costs are covered by insurance. There are random expenses here and there, but our reasoning for this decision is that if we can cure this disease, then we would not ever need to worry about the extra expenses that this disease places on our family.

It makes sense, right?

So our efforts are exerted towards raising funds to find a cure. Money that we raise will be given to the different researchers and projects that are deemed worthy by the VHL Family Alliance. Finding these researchers and projects on our own would simply be overwhelming. Also, by choosing to help the research that the VHLFA supports, we are pooling money with others who are also funding a cure.

That said, this is a page copied from the VHLFA that describes the researchers and the projects that are currently being supported:

Researchers you are supporting 2006-2007

Of the many proposals we received this year, the Research Advisory Board recommended and the Board of Directors approved funding of these three. We looked in particular for efforts that will bring new treatments to patients in the near term.

Most of us know about vaccinations that protect us from infectious diseases like polio and smallpox, but is it possible to be vaccinated against cancer? Or can we use cancer vaccines to treat existing disease? Vaccines work by introducing the infectious agent to the body to help the body develop its own defenses against the agent. Ironically, cancer deceives the immune system into thinking they are not dangerous, so that the body does not mount its full defenses.

Dr. Don Bellgrau of the University of Colorado in Denver, with his collaborators Richard Duke and Alex Franzusoff, has developed a method for tricking the immune system into seeing a dangerous situation worthy of its full defensive action. This full response then causes the body to destroy the tumor. With grant funding from VHLFA, Dr. Bellgrau will provide proof of the principle that individualized vaccines can be made for specific VHL mutation types, and develop a preclinical road map for the rapid use of this approach to treat renal cell carcinoma in humans.

Dr. George V. Thomas of University of California Los Angeles is focusing on the use of CCI-779 (also called temsirolimus, or “Torisel” by Wyeth), an inhibitor of mTOR tyrosine kinase, to stop kidney cancer tumors. While this drug shows promise in the lab, only about ten percent of the humans in the clinical trials saw significant slowing of tumor grow.

Dr. Thomas’ group recently demonstrated that human kidney cancer cells with loss of VHL dramatically respond to mTOR inhibitors, thereby providing a molecular explanation for the patient responses. Dr. Thomas will study the differences in response, correlate them with the VHL mutation type and other HIF-regulated genes in the patient’s genome, and learn how to predict in advance whether a patient is likely to respond to mTOR inhibitor therapy. He is also studying various other ways of measuring response, including PET scanning and markers in blood and urine.

Dr. Susanne Schlisio of the Dana-Farber Cancer Research Institute in Boston, with funding from VHLFA, proposes to study the key to development of pheochromocytomas (“pheos”). Pheos arise from the same primitive cells that give rise to parts of the nervous system. These primitive cells are sometimes referred to as ‘neural crest’ cells. Some families are at high risk for developing Pheos (in the adrenals) or Paragangliomas (outside the adrenals) because they have alterations in specific genes (VHL, SDH, NF1). We recently discovered that these genes all play essential roles in determining whether neural crest cells live or die. In particular, when these genes are mutated, neural crest cells that should have died as part of the normal development of the fetus escape their death sentence and go on to cause tumor development later in life. We also showed that a gene called ‘EglN3’ (pronounced “eggelin3”) plays a critical role in this process. EglN3 promotes the death of neural crest cells whereas inhibiting EglN3 function has the opposite effect.

Dr. Schlisio and her colleagues have since learned that activating EglN3 kills pheo cells and other neural crest-derived tumors. In contrast EglN3 does not cause cell death in other types of cancer they have examined to date. In short, EglN3 appears to play a special role in the decision between life and death for neural crest tumors such as Pheos. They are trying to understand the mechanisms by which EglN3 causes cell death because this understanding might, in time, allow us to induce pheo cells to die in patients, which would shrink existing tumors or prevent new pheos.

Difficult to understand, yes.
Boring to read, yes.
Worthy of a fundraiser, YES!



On a simpler note, many are still asking for ways to help us in this fundraiser.

1. Spread the word. Link Steven's site to your email and send the information out to several friends.

2. Support the breakfast and the raffle. Yes, we will also be having a raffle at the time of the breakfast. We need donations for this raffle. So if you are able to talk to a merchant...a restaurant, a hair salon, an amusement center, a store, a car dealership (HA!) and so many more... and get some goods, a certificate for a service, or a gift card, please let me know! We will also be selling tickets for this raffle, so if you are able to take a handful of tickets and sell them, please let me know!

3. Help us find donations. We are also looking for donations of pancake mix, syrup, orange juice, milk and sausage. This will allow more of the money raised to go towards our goal. If you know a manager of a grocery store and are able to have that manager donate some of these products, please let me know!

4. I need flyers! In order to print the flyers, I need to work out a few details. Some details, like a bloodmobile and the exact ending time of the breakfast are easy to handle. Others are tricky. I probably need to price the breakfastbefore the flyers go out. I want to be able to offer a small discount for pre-sale tickets. And, I want to advertise the pre-sale of tickets on the flyers. When the flyers are posted, people might start calling for pre-sale tickets. So I need a price. That is tricky. How much is a pancake breakfast fundraiser? Tricky!



And offering up ideas for how people can help would not be appropriate without also saying thank you.

Thank you for the good friends who were at Beefs today to offer help in the most needed ways.

Thank you to Jeff, the man in charge at Beefs, for giving us this opportunity.

Thank you to all who have offered to help.

Thank you to the many people who have already offered the kind words and encouragement!

Thank you!