Jenn: I began nannying for the Towne family in 2009, one year after Ben died. I had known Jeff from University Presbyterian Church and had followed Carin’s blog throughout Ben’s fight against the evil disease known as cancer. I remember attending the special prayer night at the church days before Ben passed. I sat in silence, cried and prayed because it felt like it was all I could do. A year later, when I heard the Towne family needed someone to watch their youngest son, Ryan, I jumped at the opportunity. Playing with a two year old so his parents could end childhood cancer sounded pretty darn purposeful to me. I watched and admired Jeff and Carin as they intently researched, met frequently with the foundation’s partners, and planned their first Ben Towne Foundation launch event.

Tyler: Soon after Jenn and I got engaged, we began talking about how we could use our wedding to raise support for the Ben Towne Foundation. When it came time to pick out favors for our guests, it seemed we had three main options: tubes of bubbles, candle holders, and mini-bags of jordan almonds. We were determined to find something more purposeful. Together, we decided that in lieu of purchasing favors, we would take a few minutes at the reception to share Ben’s meaningful story and make a $1 donation on behalf of each guest. We donated $130 dollars and matched it 3:1 through the Bill & Melinda Gates Foundation employee program, raising a total of $520 for BTF.  Way better than bubble tubes.

We believe in the work that Dr. Jensen is doing and the passion and fury that fuels Jeff and Carin.  We look forward to Carin’s future blog that deems childhood cancer “all done.”

*We would like to thank Jenn & Tyler so much for using their incredible celebration to honor Ben and our foundation. The only thing bigger than your smiles are your hearts!  Thank you for your amazing generosity and thoughtfulness.

March 1^st at 11am
March 5^th at 4:30pm
March 13^th at 10am
March 27^th at 10am

And please mark your calendars for our signature events in 2012:

Saturday, June 23^rd – family event
Friday, September 28^th – benefit 2012

Stay tuned here and on Facebook for more details and registration this spring for both events.

The Ben Towne Center for Childhood Cancer Research
(click for video)

Seattle Children’s Press Release

Thank you to everyone who has been part of this movement. To our family and friends, to those of you who have stood by us since Ben’s diagnosis, to all of you who have been a part of Ben Towne Foundation – this is possible because of you.

We are excited about this next step. It is about hope. It is about redemption. It does not change the past. But we believe it can change the future.

Let us walk together towards the day when all childhood cancers are cured.

With Thanks,
Jeff & Carin

“Walk On” – U2

And love is not the easy thing
The only baggage that you can bring
And love is not the easy thing
The only baggage you can bring
Is all that you can’t leave behind

And if the darkness is to keep us apart
And if the daylight feels like it’s a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Walk on, walk on
What you got they can’t steal it
No they can’t even feel it
Walk on, walk on
Stay safe tonight

You’re packing a suitcase for a place none of us has been
A place that has to be believed to be seen
You could have flown away
A singing bird in an open cage
Who will only fly, only fly for freedom

Walk on, walk on
What you’ve got they can’t deny it
Can’t sell it, or buy it
Walk on, walk on
Stay safe tonight

And I know it aches
And your heart it breaks
And you can only take so much
Walk on, walk on

Home… hard to know what it is if you’ve never had one
Home… I can’t say where it is but I know I’m going home
That’s where the heart is

And I know it aches
How your heart it breaks
And you can only take so much 
Walk on, walk on

Leave it behind
You got to leave it behind
All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you feel
All this you can leave behind
All that you reason
All that you sense
All that you speak
All you dress-up
All that you scheme…

At the risk of annoying you and filling your inbox further, we want to apologize for the duplicate emails you have received the past two days. We are in the process of updating our website and are clearly experiencing technical difficulties. Our network administrator has been contacted and we hope to have this issue resolved as soon as possible.

Thanks for your patience and understanding.

Sincerely,
Ben Towne Foundation

I remember every kid I have loved that has since lost the battle and the pain of every parent that I’ve supported through the disease. I remember at Side by Side camp last August when I got to share with the family at my table that there was an incredible breakthrough in research. I will never forget the tears over breakfast that morning as a mom in the midst of a battle for her son just kept saying, “There might be a cure. There might be a cure. Please just let it be in time.”

On Dec 30^th, I read the Towne’s blog and was reminded again of this little boy I’d never met who had such an amazing impact on the world. Then ten minutes later, I got news that one of my Side by Side buddies, a six year old girl, had passed away on Christmas day. GRRRRR!!!!! So I issued a challenge to my Facebook friends: donate something, anything, to Ben Towne Foundation to find a CURE and I’ll match it. And since I work at Microsoft, they will match my donation, too. Two days later, the tally was at $4935. And the final tally between my friends’ donations, my matching and that of Microsoft, was somewhere over $5600!

One of the things I found so cool about this little New Year’s challenge is that across my friends, there were donations of $10 and donations of several hundred dollars. As these were all my friends, I have a pretty good sense of their financial challenges and know that each one gave from their heart, out of what they had to give, and every donation, no matter the size, came with love and encouragement both toward me as their friend and toward the families challenged by this disease.

*Thank you so much Malia your inspiring and heartfelt efforts. Though Ben was never able to attend Camp Side by Side we are grateful for the ways in which so many like you are walking alongside and supporting families in the midst of childhood cancer here in Seattle. Thank you to everyone who contributed via Malia’s New Years Challenge as well. What an amazing way to start 2012!

Speaking of 2012…stay tuned on Monday, January 23^rd for our big announcement!

Ben was diagnosed with neuroblastoma, a solid tumor that started in the adrenal gland but metastasized throughout his body, just after his second birthday. In 2010, the Townes established the foundation.

One hundred percent of the money raised by the foundation supports the work of Dr. Michael Jensen, ’97, and the new Center for Childhood Cancer Research at Seattle Children’s Research Institute. Jensen is pioneering a novel cancer therapy that inserts recombinant DNA into the body’s own T-cells to recognize and kill cancer cells.

The new therapy is months away from FDA approval and clinical trials, but it holds great promise because it could eventually eliminate the need for chemotherapy, surgery and radiation. These treatments can cause hearing loss, growth problems, infertility and other side effects in children. The Foundation held a successful fundraiser at the Seattle Sheraton in September, drawing 900 people. In 2011, the foundation donated $1 million to the Center for Childhood Cancer Research.

Source: http://www.washington.edu/alumni/columns-magazine/december-2011/the-hub/cancer/

Thank you for reading, for “liking”, for forwarding, for coming, for listening, for giving, for sharing, for planning, for dreaming, for remaining – for hoping with us.  Your participation in 2011 was inspiring. 600 of you at the Cars 2 event, 900 at our benefit, and so many willing to use their own networks and celebrations to further our mission. We have highlighted many of them on our blog and Facebook – but there are many more like these:

Leslie in Princeton, NJ – honored our foundation at her 50^th Birthday
Aaron & Ellen in San Francisco – asked in lieu of gifts for people to make donations at their wedding
Jenn – coordinated a team at Microsoft to “knock out cancer” during their giving campaign
Annie – wrote about our work on her blog
Mollie and Heidi – gave generously from their own Stella & Dot proceeds
Jeane – once again used her annual Christmas party as a chance to give
Kirstin in Bristol, UK encouraged her family to celebrate her 21^st Birthday with a gift to BTF
Dana – “the Possessionista” shared about us with her 20,000 Twitter followers

And so many others…like you.

Together this calendar year we have raised 1 million dollars towards curing childhood cancer! This is incredible and we are so grateful for the hearts and generosity of all of those who have contributed. Yet, we know that there is much more work to be done. We know that today a family will receive the news that their child has cancer. Today someone’s baby will receive his or her angel wings. Today cancer still remains the number one disease killer of our children. Three years ago today – it took our child. And so we press on. We remain committed to the work that is happening here in Seattle on behalf of children everywhere. Believing that there will come a day when a family will hear the words, “The bad news is your child has cancer. The good news is we can cure them.”

Onward. To 2012…

There will be much to accomplish and much to celebrate in the New Year. We have a very exciting announcement to make in January! So stay tuned via our blog, Facebook or on our website.

In the meantime, Happy New Year. Our best wishes to you and your family for a healthy and meaningful 2012. Thank you for making Ben Towne Foundation part of your lives.

With Gratitude,
Jeff & Carin Towne

Here is one of my absolute favorite pictures of Ben – our second Christmas with him, looking for the perfect tree in 2006.

Just a year later Ben was five months into treatment and would be lucky to be home for Christmas if he recovered from his surgery in time. Stem cell transplant was just around the corner. A “live” tree was not in the game plan, as we couldn’t have plants in our home. Ryan was just a few weeks old, so needless to say, “Christmas” was not on our minds. Survival was.

My parents, wanting to bring some sort of merriment into our crazy existence, bought and set up a fake tree in our living room one day. A small gesture, but it did indeed brighten up our days that year. Ben loved it, as did we. A year later in 2008 Ben was dying – literally. But up this tree went.

(Here is Ben & Kristen sitting by the tree in 2007)

Last year, our 2^nd Christmas without him, “Ben’s Tree” presented us with some electrical issues. The middle section of the lights went out. How appropriate. Normally most people would just take that strand down and attach another – but this tree is pre-wrapped, as in all the lights are attached. So after last season we boxed it back up and decided not to deal with it until this year.

With the holidays upon us again we wondered what were we going to do?  It was probably best to just give it away and start again fresh we initially thought. It would be fun to take Ryan to pick out a tree like we used to. It seemed all decided until while walking through Costco Jeff mentions casually that he is going to take the broken fake tree to the goodwill. *cue grief episode*  Instantaneously my eyes burned, tears fell, my chest heaved, my longing for my son so intense you would have thought he had literally just died in Costco next to the toilet paper. Nice. It is strange when, where and how grief moments are triggered. But triggered it was. And with a rage I was like, “We are not giving away Ben’s tree. I want that tree for the rest of my life.”

At least the moment was clarifying.

Jeff agreed to appease my volatility but gave me the job of finding an electrician to fix it – knowing full well we were about to pay more than the fake tree was even worth. Yes, it was crazy, but grief is crazy – so to me it was worth it no matter how much it cost. I called numerous electricians and basically was told in a condescending way they didn’t do “that kind of thing.” I was about to start pleading and begging my case when Holley (the perfect name for this holiday project) answered his phone and told me in a very friendly and kind way that he would come take a look at it.

Holley spent a couple hours with us and Jeff continued the work after he left. But I am pleased to say that after $200 + dollars, many hours and some definite cuss words from my better half – the tree is back in order. Sometimes grief can be expensive and time consuming. This much I know.

It’s about hanging on I guess. Hanging on to anything and everything. Longing for Ben – and he is gone. But his tree is still here. So just like our life, sometimes your traditions change. We are (and seemingly forever) the family with a fake tree – with white, non-blinking lights that now thankfully work.

O Christmas Tree, O Christmas tree, how lovely are your plastic branches…

Last week we had the honor and privilege of being featured by Tom Douglas’ Dahlia Lounge as one of their charities of choice at their Dine & Wine 2011. First of all, if you have never been to Dahlia Lounge – you must go. Now. It is hands down one of the best restaurants in Seattle and you will not be disappointed. We have dined there many times and always walk away amazed by the gorgeous atmosphere and incredible food.

I would say Thursday night was no exception – except that it was beyond exceptional. It was such a lovely evening. We want to sincerely thank everyone who attended. We were grateful for your presence, generosity and interest in our work. We were thankful as well to Tom Douglas himself for stopping by to say hello to us and compliment his very talented head chef Brock Johnson.

The evening featured an exclusive and delicious menu prepared specially by Brock and accentuated by favorite Northwest wines. Brock introduced each course personally as well as the wines – which made the evening so much fun. We enjoyed Sparkman Cellars – 2010 Pearl Sauvignon Blanc, EFESTĒ Winery – 2010 Evergreen Riesling, Syncline Winery – 2010 Counoises, and Mark Ryan Winery – 2008 Long Haul. Thank you to these wineries for their generous contributions!

The conversations were engaging and the dinner such a treat that it seemed like a shame to even interrupt everyone. But we did. Jeff, myself, and Dr. Jensen had the chance to share about Ben Towne Foundation’s partnership with the Center for Childhood Cancer Research and the real hope that we have of changing the way kids are treated and cured from pediatric cancer.

In their invitation to Dine & Wine 2011 here is what they said:

“In creating this private event to benefit one of their chosen charities, Ben Towne Foundation, the Dahlia Lounge zealously joins the effort to end childhood cancer.”

That sentence took my breath away. As did the entire evening. Our deep deep gratitude to chef Brock Johnson, Amy Bryant, the Dahlia Lounge event staff, as well as our dearest friends Jon and Heather Foster for putting together such an incredible evening. We felt so honored to be included.