Monday, June 1, 2009

We Need Your Help

Today is June 2, and the end of Brain Tumor Awareness Month. I looked hard last month for some mention of pediatric brain tumors in the media, and didn’t find much. I realize that there is an obvious lack of public awareness when it comes to brain tumors, because we just don’t hear enough about it from the media. However, I expected to hear more in May because it is now a nationally approved month recognizing “Brain Tumor Awareness” but sadly I didn’t. I wrote to a few different media sources…Oprah, The View and more, hoping to gain a national audience but I didn’t get a response. I wore my brain tumor awareness shirts as often as I could, and made it a point to mention brain tumors and tell Sophie’s story to strangers. Just because May is over, I will not stop trying to raise awareness about brain tumors, especially DIPG. Hopefully you will join me in raising awareness by continuing to share Sophie’s story.

We are getting excited about the 2nd Annual Birthday Bash and Dash and the planning is coming along nicely. We are slow with the fundraising efforts this year, so we are asking for your financial support, as this is our largest fundraiser and the primary source of income for our research and family grants. We realize that we are living in a tough economy, as family and friends of ours have had to deal with pay cuts and/or job losses. It’s hard to ask for money when we know many people have little extra to give, but when I read something from Marlo Thomas at St. Jude, it put it all into perspective. She made reference to the fact that just because we are in a recession, the needs of children with cancer are not. In fact, the recession makes the needs of these families even greater. If you are going through a tough time financially, imagine going through it with a child who has a DIPG, or some other type of terminal illness. Nothing could be worse. We were fortunate during Sophie’s illness not to have financial worries and the experience was still a living hell. I can’t imagine those families living the nightmare and also worrying about mortgage payments and food to eat. I’m asking you to consider making a donation to our race. To donate online, follow the link below, or you can mail a check. We thank you in advance for your support. By making a donation of any amount, you truly are making a difference in the lives of families afflicted by pediatric brain cancer. You can read about the families we have helped by going to our website and clicking on the "How We Have Helped" tab. To date, we have granted almost $25,000 to families, with another $15,000 given to St. Jude, of which $10,000 has been designated specifically for DIPG research.

We are hoping to make another donation to fund a research grant of some type. We don’t know yet what it might be, but we realize the need for a cure as we read about more and more children diagnosed with brain cancer who are given very little hope. I’m including some information that I found through the DIPG online group. It’s another wake up call regarding the deadliness of DIPG. In a Korones Review article from 2007 regarding DIPG it says ".... We have made little progress in curing children with the devastating and vexing tumor. It's deep and critical location precludes surgery, its transient response to radiotherapy, its refractories to chemotherapy and its elusive biology have all conspired to make it a uniformly lethal disease....."
The Mikey Czech Foundation recently released some stuff from Dr. Mark Kieran "During the past 35 years, there have been 250 clinical trials for DIPGs and not one of those has been successful. Not one!" So please, I can’t say it any other way…we need your financial support!

Below is more information about sponsorships for the race, as well as information about the TV raffle that will start on July 4th. We are discussing the possibility of having a few silent auction items at the race, so if you have items to donate, please contact Kristin at We thank you again for your support, and we would be honored to see you at the race on July 4th! You can register online at

The printing/advertising deadlines for corporate sponsors, gift in-kind donors and personal donors has been extended to June 15. So, if you were planning on donating to support the SFSF Second Annual Birthday Bash and Dash, please get your donations in so you will be included in our printed materials. See the list below for the various donation levels and corresponding advertising.

Red ($100): internet advertising
White ($250): internet advertising, name on race day program
Blue ($500): internet advertising, name on race day program and race tshirt
Firecracker ($1000): internet advertising, name/logo on race day program and race tshirt
Grande Finale ($2500): internet advertising, name/logo on race day program, race tshirt and race day banner

If you will be donating at the $1000 level or above, please be sure to email your logo to

This year SFSF will be holding a raffle for a Sony 40" Bravia LCD HD TV ($1499.99 value). There will only be 200 tickets sold and the tickets are $20 each. Tickets will go on sale on July 4, during the Birthday Bash and Dash, and the drawing for the winner will be held when all 200 tickets are sold.

If you know of any company who might like to be a corporate sponsor or of any company who may be able to donate items we could use, such as flowers, food, water, goody bag items, etc, please contact them ASAP. The slow economy has definitely affected the race this year, but there are still kids and their families who need our help. To date we have awarded $21,500 in family grants and we know the applications will continue to come. So, please solicit support from wherever you can. All applicable forms are on the SFSF website.

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