Thursday, October 10, 2013

Inspired to Give

1100 people gathered for the Ben Towne Foundation's BENefit 2013 (Image: Bryce Covey Photography)
Around here, autumn is the time when many charities host fundraisers. Gregg and I are always pleased to attend the Ben Towne Foundation's annual BENefit. We've had the privilege of being an active part of this event from its inception, and watching it grow each year lifts my heart like no other "gala" can.

Though the thing that drew us together with the Townes is the worst thing that has ever happened to us, our friendship goes far beyond that loss. It includes our sense of humor, commitment to family, a lot of coincidences, shared tastes and sensibilities, fierceness, passion and joie de vivre. It is pure pleasure to be counted among their friends and supporters, and to do all that we can to share their message and raise awareness of it.
Jeff & Carin Towne with Dr. Michael Jensen (Image: Bryce Covey Photography)
Though there are always some moments during the program that make me cry, most of my emotions at the BENefit are joyful, because the Ben Towne Foundation is getting the job done - making my dreams of a cure for pediatric cancer come true, in this time and place. Through their efforts, the pace is accelerating here in Seattle under the leadership of Dr. Mike Jensen and Dr. Rebecca Gardner (two special favorites of mine), among others. The Katie Gerstenberger Endowment for cancer research supports their laboratory.
Reba & Mary-Jane with me
Joining us at our table were my parents, brother Jim and sister-in-law Caroline, and our friends Reba, Bill, Mary-Jane and Brian. Let me give you a few statistics about our table: 60% of us had our only daughter die from pediatric cancer. Every single person at our table (100%) had suffered the loss of someone close to them as a result of pediatric cancer. For 20% of our table, it was their ONLY child (100% of the children in that family). All of us want to see this disease wiped out, with as few side effects, as quickly as possible. And we were in the right place to help the researchers accomplish that.

The news is good, my friends: the first patient in the clinical trial of T-Cell therapy continues to enjoy remission, gained after only 9 days of treatment, with side effects of flu-like symptoms during that time. The next patient is ready to enroll, and it looks as if the clinical trial will soon be expanded to include a much broader range of ages - open for more patients to be treated and cured in this new, non-toxic way!

Did you know that it can cost 10 times more to treat a child with traditional chemotherapy than with T-Cell therapy - and surgery costs even more? The bill for Katie's care was in the neighborhood of a million dollars, for which we were (thank God) covered by medical insurance - but there are many whose finances are completely wiped out by such treatment, and without the promise of a cure!

Think of it this way: you could spend $350,000 for a patient to endure chemo, which can cause secondary cancers, organ damage, susceptibility to infections and reproductive problems - or $30,000 for a patient to have T-Cell therapy, with no long-term damage whatsoever, and continuing immune-system support for remission. Which would you choose for your child - or for yourself? What would you like to see become the "norm?"

Last week, I had the privilege and pleasure of attending an elegant "thank you" party for Seattle Children's Hospital's Circle of Care as the guest of one of our dear friends. The Circle of Care was conceived and founded by Scott and Laurie Oki, at Seattle Children's through their challenge grant of $1,000,000 in 1993; since that time, it has spread across the nation and has inspired $4.7 BILLION of giving to 25 children's hospitals in North America! This group is deeply appreciated by the hospital community. We enjoyed an inspiring evening of intimate conversations with top doctors and supporters who are equally committed to improving the health and quality of children's lives. I hope someday to be able to join the Circle of Care!

On this day - the very one on which Katie was admitted into the hospital in 2006 - people such as Katie, Carin and Jeff Towne, Dr. Jensen, the Okis and all of the members of the Circle of Care inspire me. Who (or what) inspires you to give?


B.J. Yudelson said...

Karen, you have truly turned your tragedy into lemonade. That may sound trite but you know I don't intend it that way. I know too well your pain and anguish. I lfind your attitude of gratitude and your determination to help other parents' children inspirational. Keep up the good work! xoxo B.J.

Robin Gaphni said...

This is such an inspiring post, Karen. Thank you. I've often thought the way we have approached cancer treatment is just plain wrong, and that 50 years from now we will look back and wonder what we were thinking. Immunotherapy just makes sense. I'm so grateful for you and the Townes and all the other people who are making this a reality,

Anonymous said...

This means so much - and your friendship means more. THANK YOU!!
Lv, CT

Elizabeth said...

I have so loved hearing about this benefit over the years that I've known you, Karen, and feel so proud and amazed, too, at all you and they have accomplished. You look gorgeous in all of the photos -- a shining light.

Karen said...

Your table's statistics were heartbreaking, yet I loved that you were all there, sharing the burden of loss, yet working hard to put an end to pediatric cancer. You are very inspiring, my sweet friend, and creating hope for so many. You have found your place after losing Katie and I am thankful for you. You also looked gorgeous---just sayin'! I also read your comments to Robin today, and felt/agreed with every word. I am still hoping we all can get together. I am missing my circle of understanding right now.

Kay said...

This is such amazing work! I tire of the same ole "chemo song and dance" because I have always known there were other ways out there. Less toxic. Less expensive. FAR fewer side effects. Simply amazing. I pray this sort of mindset for treatment becomes 'the norm' across the board. Can you just imagine the difference it could make in so many people's lives???? And to be able to be strong during and after treatment helps survival as well, rather than being so so broken down by the toxic chemo drugs. Thank you for sharing this! So hopeful! : )

Busy Bee Suz said...

What an amazing BENefit....all of that good work for the better of us ALL!
Those statistics at your table, well that is just heartbreaking. :(
So glad you've made so many wonderful connections through all of this.