After our launch party in September of 2010, a group of women on the east side came to us and said, “We want to form a chapter for Ben Towne Foundation”. We were of course blown away and very excited about the possibility. But how would we form a chapter? We had no idea. Over the weeks and months that followed, we began meeting and figuring out what this partnership would look like. Luckily for us, they were patient and incredibly helpful in the process. And just over a year ago they officially began as Ben Towne Foundation Eastside Chapter.

Since then they have been hard at work on our behalf. From garage sales, to book events, to jewelry parties, to raising awareness at the Issaquah Farmer’s market, to volunteering at the Ronald McDonald House, these women have been incredible. And on Saturday night they hosted the most fabulous event – “Cheers to a Cure” at Alexandria Nicole’s Tasting Room in Woodinville, WA.

It was an evening of delicious food, lovely wines, an auction and very fun people. The attention to detail was amazing, as was the time and effort these women put into putting on such a fantastic event. Jeff and I, along with Dr. Jensen, the Director of the Ben Towne Center for Childhood Cancer Research, had a chance to share about our mission.

I have been reflecting a lot on this group of women the past few weeks. They are smart, beautiful, and very capable women. They could choose to give their time to any number of philanthropic endeavors, but they have said to us in more than words, “We will stand with you.” They are willing to look a difficult subject square on – and in doing so, help us immensely to move our mission, awareness and work forward. To say we have been grateful to them would be a gross understatement. It is one thing for us, as parents of a child who died of cancer, to advocate for better research. But to see these women (and their lovely spouses), who all have families of their own, dedicating their time and efforts towards what we are doing has been one of the highlights of the past two years.

Thank you so much to our Eastside Chapter for all your efforts. And thank you to everyone who attended “Cheers to a Cure” for your presence and generosity. It was an honor to share with you about our work.

To learn more about how you can start a chapter in your hometown or community, feel free to email us at info@bentownefoundation.org.

There is no way in words to describe the role that Disney/Pixar films played in Ben’s life. While Cars was his hands down favorite movie (I think we watched it maybe 1,000 times?) - Finding Nemo, Monsters Inc., and Wall E were fixtures in our house and at the hospital. When the rest of his world was upside down, he felt most comforted watching his movies. So naturally when Cars 2 came out last spring we knew we had to plan an event around it in Ben’s honor. In June 2011, we hosted 650 adults and children for our first family event. It was a really fun way to introduce kids to our organization and an easy way for adults to invite their friends and co-workers to come and learn more about what we are doing.

When we first heard the title of Pixar’s upcoming release – Brave – we couldn’t help but think about how that word alone encompasses the population of children we are trying to help. So this year we will be doubling our efforts! We are excited to announce a private event/showing of Disney/Pixar’s Brave and hope you will be able to join us!

Click here to Register!

Date: Saturday, June 23^rd

Time: 10:00 a.m. showtime; doors open at 9:00 a.m.

Location: Lincoln Square Cinemas in Bellevue, WA

This film is not yet rated. For more information, including a trailer, please click here.

Many Thanks to Slalom Consulting for their sponsorship!

*parking is free at Lincoln Square and movie concessions will be open for your convenience*

Similarly it seems there have been beautiful, compassionate and extremely generous little girls in recent days whose big hearts have been bursting with support for Ben Towne Foundation. Let me share a few of them with you… 

Ashley – Ashley decided to have a lemonade stand last weekend and enlisted her sister Morgan and friend Charlie help. Their plan is “to raise money at their lemonade stands all summer so there is more to give.”

Lily – “Lily just turned 7 and after some discussions that she really has everything and more than one could possibly need, she decided on a no gifts birthday party. We encouraged her to pick a charity so that if people did want to bring something, they could donate. After telling her about a few, she picked Ben Towne Foundation and on Friday evening she raised $260!”

Kylia – “We have a change jar we fill and then Kylia gets to decide who we donate it to. Without pause, she said Ben Towne Foundation. She even asked others to help us fill it. When we started planning her birthday, she said she wanted her friends to donate to Ben Towne Foundation. Afterwards we were talking about her party and her friends and how she didn’t get any presents. Before I could say how cool that was, she stopped me (somewhat annoyed) and said “Mommy, I DID get presents. My friends gave my present to Ben Towne Foundation so I can help kids feel better.”

These girls are showing what we know to be true: that kids can change the way pediatric cancer is treated and cured. Thank you so much girls!  And thank you to these amazing and compassionate parents who are leading their families in examples of philanthropy.

And speaking of kids…Stay tuned next week for our family event announcement and registration!

“We are happy that so many of our clients have rallied around this important cause through the efforts of the Bar Method community in both Seattle and on the Eastside.

• 250 clients completed the TEN FOR BEN CHALLENGE in September raising $2500
• 165 clients completed the MARCH MADNESS / SWEET 16 CHALLENGE in March raising $1650
• In total our clients took 5140 Bar Method classes in the name of Ben and raised $4,150

This truly has been a community effort. We were grateful to have received corporate support and involvement from a number of local business through giveaways and incentives provided to our challenge participants. These companies include: Nordstrom / Zella, Vita Spa Seattle and Julep. Also, we were excited when our front desk guru Melanie chose to make Ben Towne Foundation the focus of her WSU college class’s fundraising efforts (ironic considering your fierce loyalty to the DAWGS).

In summary, we have experienced a large community of people who have been energized by this cause. Through this journey we have discovered clients who are personal friends and sorority sisters of Carin, clients whose careers are dedicated to fighting cancer and clients who have personally been affected by the loss of a child to cancer. We have also discovered many who are becoming aware of this cause and have been inspired to become more involved. This is exciting!!!  The bonus for many of our clients is that they have seen huge transformations in their own lives, becoming more fit and healthy.

We want you to know that there continues to be a large surge of support for what you are doing… even in places where you may least expect it (Bar Method). Your loss was tragic but it is incredible the amount of love and support that has come through your loss and is bringing about a massive sea change.  Thank you for everything you have done and are continuing to do!! “

** Thank you so much to Luke, Bev, Maika and everyone who participated in the Seattle-Eastside Bar Method challenges. We are grateful for your support, creativity and generosity!

***
Seattle Foundation members, mark your calendars for the GiveBIG giving event next week!

Wednesday, May 2, 2012

www.seattlefoundation.org

A one day online giving event. Donate by credit card on The Seattle Foundation’s website, select Ben Towne Foundation as your beneficiary and your gift will extend even further thanks to GiveBIG sponsors.

When we launched our foundation in September 2010 we had a bold vision – to accelerate the pace of pediatric cancer research and change the way childhood cancers are treated and cured. To accomplish this, we figured we needed to do a few things: create a movement, establish a vital partnership with the Center, and take our mission outside of Seattle. Two of these goals are well underway, so we figured it was time to take our show on the road!

A key reason to do this is because the work that is being done right now at the Ben Towne Center for Childhood Cancer Research has the potential to affect children across the United States and potentially the world. The Ben Towne Center for Childhood Cancer Research is the only facility in the Western U.S. with the infrastructure (GMP facility) to manufacture T-cell therapy for children diagnosed with cancer. Together with Center Director, Dr. Michael Jensen, we envision a day when children are cured of cancer without the devastating side effects of chemotherapy and radiation. When this comes to fruition it will truly be a revolution in the treatment of pediatric cancer.

“Come on Everybody!”

In this video that many of you have seen, you can see our friends Dana and Frank and Sarah and Ryan – representing Boise, Idaho. Having received dozens of donations from Boise, we knew it was just a matter of time before we had an event there. Last Thursday we enjoyed a lovely evening in Boise. The event was hosted at the beautiful home of our family friends Howard and Becky. Dana and Frank, Sarah and Ryan, and Kate and Bill were vital in inviting and bringing their friends and colleagues to the event. After enjoying cocktails, appetizers and desserts for an hour, guests gathered to listen to our program. We were about five minutes into our content when a huge hailstorm completely shut down the power. While we are both fairly decent speakers, some of the more important content lay in our video presentations – so to say we scrambled would be an understatement. But somehow we managed to convey what we had hoped and the audience was incredibly gracious. The party continued into the dark of the night – with candlelight bouncing off the walls. A lovely time was had by all – despite Mother Nature’s interruption. I am guessing it will at least be something people remember!

Thank you so much to everyone who attended. We were grateful for your presence and willingness to take time out of your Thursday night to be with us and to learn more about Ben Towne Foundation’s mission. Our immense gratitude to our incredible friends for helping us put together this evening and helping us to raise awareness for this work. We look forward to returning there in the future!

It is with that acknowledgement that I have the utmost respect for my friend Karen. Karen has bravely chosen (not without sacrifice) to retell her daughter Katie’s experience from diagnosis to death in her new book “Because of Katie”. She did this first and foremost so that medical professionals might better understand the journey an entire family takes when their son or daughter is diagnosed with childhood cancer. Her ultimate goal is that it would be required reading for all professional persons entering the world of pediatric cancer. But I also think it will be immensely helpful for friends and others who wonder what it is like for a family to walk this hellacious road. Karen is brutally honest, which I appreciate immensely, and articulates so many of the challenges a cancer and hospital life brings to those thrust into it. While there are many differences between walking through this with a teenage daughter verses a two-year-old son, much of it is universal to the experience and I am thankful she was willing to go back and commit it to paper. Thank you Karen!

Here is a passage from “Because of Katie” that resonated with me greatly:

One important thing to note about patients and families in the hospital setting is the fact that, no matter who we are in the “outside” world, we are stripped down to our essence in the hospital world.  Whatever our job, our title, our level of education, our socioeconomic milieu, our looks, our self-image, our background – none of that is of any value or importance in a health crisis.  We are only exactly who we are the moment the crisis occurs, nothing more or less.

Wealth, advanced degrees – even religious beliefs – nothing is of any consequence except who we really are, inside. What we think or what we believe will crack very quickly under the stress of our child’s illness; our essence, our deepest truth, arises out of the ashes of our former life.  The families you will meet will be stripped down to their essence.  They might try to flex and show you some of their more impressive qualities, but cancer is a great equalizer.

There are no shortcuts or advantages in the cancer ward.  We are who we are, and – as with old age – in the stressful environment that is a pediatric cancer ward, we become even more who we really are.  So it is good to be mindful that the people you encounter are, to a large extent, more naked than they have ever been, and more frightened.  They are facing life and death issues, some for the first time ever, and they are finding out that they cannot take anything extraneously with them on this journey.  My experience confirmed for me, that leading with love is the only way to make it through the hospital journey.

Jeff and I spent the dreary Seattle winter months watching the entire series of Friday Night Lights. How in the world did it take us this long to discover this? Why were we so late to the party? Oh wait, our son was sick and dying. Right. Anyways, thankfully we finally arrived in Dillon, Texas – and not a moment too soon. This was hands-down the best television drama that I have ever seen – the acting and writing were incredible (minus one random story line in season two). As we got closer to the end of series I started becoming increasingly sad. I didn’t want to depart with this show, nor it’s characters that were now my friends. The last ten minutes of the series finale felt like a horrible break up.

It has been weeks now. And I miss them. Not like I miss Ben – I’m not that crazy. But still…I miss them. I think about the Taylors, Riggins, Landry, Tyra, Matt Seracen and Julie, Buddy Garrity and more. I wonder how Jason Street is doing in NYC. Oh wait… he isn’t there for real. He is just an actor. Maybe I am crazy.

Luckily, spring has semi-arrived in Seattle. And with it, there have been some lovely people in our real lives lately – people that have huddled around the work we are doing. Supporters who truly have clear eyes and full hearts. Here are just a few of them:

Our family friends Pam and Roger generously gave of their time and gas to drive wine to Boise, Idaho for our upcoming event there.

Ray – our good friend and incredibly talented designer who continues to design gorgeous work for us with as much thought and perfection as if he were working for the Metropolitan Museum of Art.

The hand-written check that arrives every month in the mailbox from our dear friends. Opening that check is a reminder of so many of you who are contributing monthly to research at the Center.

Our sweet and darling neighbor Justine who brought over a jar to us recently. It contained money that she has been saving all year to give to BTF through her hard work!  We continue to be amazed by kids who just get this – the definition of clear eyes and full hearts!

And so many more…

So while I pine for Coach Taylor and just a few more “y’all” quotes from Tami – I am thankful for the real people in our life who are part of our small, but growing, towne. Thank you!

A couple weeks ago Jeff took me to see Blake Shelton at Key Arena. It was so kind of him, seeing as how I am in love with Blake. If you aren’t familiar with Blake Shelton’s music, you may know him as a judge on the Voice. He is funny, charming, and handsome (now that the mullet is gone) – but perhaps most media attention is given to the fact that he is married to Miranda Lambert – another country star. My infatuation with Tim and Faith awhile back was similar – but they were like Barbie dolls that you wanted to mostly look at. Blake and Miranda strike me as people I would want to be friends with – to hang at the cabin with. And I am pretty sure Miranda could take care of our current raccoon problem there – as she clearly knows how to use a gun (this is where I depart from many of my country favs).

Miranda and Blake co-wrote a song recently called “Over You”. It is on her album Four the Record. It was written in honor of Blake’s brother Richie, who died in a car accident when Blake was fourteen. Blake chose not to put it on his album, as he didn’t feel he could sing it every night in concert – but was honored when Miranda put it on hers. Many of the lyrics seem as if they were written for me (the gift of songwriters) and some not as much. But it is an incredibly powerful song.

Her video for “Over You” came out this month and I have to say I was blown away. Even as a fan, I didn’t think it was possible for a country music video to reduce me to tears. But that it did. I don’t know if it is the snow, the two boys, the younger one looking for his brother, or the beautiful horse that visualizes the ebbs and flows of grief and a longing spirit so brilliantly – but something in this video is right on. It is a visual walk through the mind of someone who is grieving. Now if only I looked as gorgeous as her on my own journey of loss – vintage and all. Oh well. Yoga pants will have to do. Kuddos to director Trey Fanjoy for creating such a piece.

“Over You”
(scroll down for video – best watched in full screen!)

Last Saturday Jeff and I had the privilege of attending and speaking at the “Love, Give, Cure” Luncheon hosted by our new friend Nancy. Nancy had a vision last fall of hosting a beautiful spring luncheon in this gorgeous barn on Whidbey Island. Though spring has yet to arrive here in Seattle, you wouldn’t have known it inside Greenbank Farm.

Surrounded by gorgeous flowers and beautiful music, about a hundred people gathered to enjoy a lovely lunch and auction. Each place setting had its own unique china! Its purpose was to raise funds and awareness for Ben Towne Foundation and we were honored to her charity of choice.

We continue to be amazed at the ways in which people are willing to dream big with us – creating their own unique fundraisers and events. Thank you so much Nancy for your incredible vision and generosity. From growing 400 tulips yourself, to creating a delicious menu, to gathering items for auction, to enlisting an incredible team to serve everyone – it was truly an amazing undertaking. Thank you to everyone who attended, volunteered and gave so generously. 100% of your contribution goes directly to fund cutting edge research at the Ben Towne Center for Childhood Cancer Research.

Emily’s 6th Birthday – Seattle, WA

Ben has been a part of our lives since we met him at UPC during summer camp. My boys (at the time 5 and 7) visited him in Jeff’s office, and of course, he was playing with his cars. He was a cheerful as could be, and it was hard for my boys to believe he was sick. We prayed for Ben, and we pray for the Foundation and the cure for cancer. Cancer has been a part of our lives as it has affected too many family members and friends. The kids have experienced the destruction and the “hope”. Your foundation brings Hope! Our family has watched your video on your website. Your faces are connected to the goal: collect donations for the foundation to find a cure. We’ve been receiving your updates about kids who have organized creative ways to make money for your foundation: lemonade stands, girl scout troops with fun ideas, and the donations from birthday parties. Emily is the first to choose to help “for every birthday party ever”, and the boys will follow suit. Thanks for the inspiration and the determination to make a difference in the fight.

Kelly’s 7th Birthday – Redwood City, CA

I have been hoping for some time that I could find a way to make a contribution to your organization and am hoping that my daughter’s birthday party can do that. She is turning 7 and is finally to an age where I think she is beginning to understand how she can help others. It has special meaning to me as her party will involve having her girlfriends see the production of Annie at her school. When I was five my best friend, Sara died from Leukemia at Seattle Children’s Hospital and during her time there the cast of “Annie” came to see her at the hospital. To tie in the donations to the Ben Towne Foundation gives me great hope that some day parents like you and Sara’s will not have to suffer such agonizing pain.

**Thank you so much to Emily, Kelly and their families for their incredible generosity and selflessness. It means so much that you would use your own celebrations to further our work. We wish you both very healthy and happy next years. Our gratitude…