C&S Features writer Brandi Garsteck interviewed Leah Blowes, who does accounting for the 11:11AM Foundation. 11:11AM is a charitable organization that works to support pediatric cancer research, and has been a part of the Vans Warped Tour since 2006.
Leah has dedicated two full summers to being a part of the punk rock travelling circus, as well as having spent several years volunteering. If you’ve ever been curious as to what it’s like to be on Warped, read on for the interview!
Check it out!
Photojojo founder, Amit, has found a 10/10 bone marrow donor match! (10/10 is really good!)
Thank you to everyone who has run a bone marrow drive or sent a note of support. You guys rock.
Here’s a note from Amit below.
Many of you have asked, so here’s what’s going on with me.
WHAT HAPPENED BEFORE
- 8/1979: Born. Grew up in CT, built a killer eraser collection, fell in love with computers.
- Left college to start a company. Fell hard. Fled to India for 3 months.
- Started 2nd company. Learned to be an adult. Fell in love with NYC.
- Moved to SF, discovered burritos & some of my fave people on Earth.
- 9/2011: Got diagnosed with Leukemia!
- Cried. Went through 3 cycles of chemo. Hurt. Thought hard about what I want out of life. Grew up a second time.
TODAY
… After over 100 drives organized by friends, family, and strangers, celebrity call-outs, a bazillion reblogs (7000+!), tweets, and Facebook posts, press, fundraising and international drives organized by tireless friends, and a couple painful false starts, I’ve got a 10/10 matched donor!
You all literally helped save my life. (And the lives of many others.)
WHAT HAPPENS NEXT
Tomorrow, I’ll be admitted to Dana Farber in Boston for 4-5 weeks.
First I’ll get a second Hickman line to allow direct access to my heart (for meds and for nutrients if I’m not able to eat). Over the next week, the docs blast my body with a stiff chemo cocktail to try and eradicate all traces of cancer cells. In the process, the immune system I was born with, and my body’s ability to make blood, are destroyed.
Next Friday, I get my donor’s stem cells by IV. I start on immunosuppressants to prevent my body from rejecting them (I’ll be on them for 12-18 months). For these weeks I’ve no immune system, so I’m severely vulnerable to viruses and bacteria. My hospital room and hallway become my world.
Meanwhile, the stem cells make their way to my bone marrow and, with some luck, start producing platelets, red blood cells, and white blood cells. At this point, my blood type changes to the blood type of my donor. And my blood will now have my donor’s DNA, not my own.
This is science fiction stuff. I can hardly believe it’s even possible, and there’s lots of chances for things to go wrong. It’s frightening.
AFTER THE TRANSPLANT
Recovery to a new state of “normal” takes about a year, but there’s a few storm clouds hovering:
- My immune system is new, like a baby’s. I’m prone to getting sick.
- Just as with any organ transplant, there’s a chance of rejection. Except in this case, it’s my blood that’s the foreign body, and it touches every organ. They call it graft-vs-host-disease and it can cause health issues and organ complications for the rest of my life.
- Successful transplant or not, Leukemia can relapse. Stubborn mofo.
Overall, 75% of AML transplant patients survive year one, 50% make it through year five. My odds are a little better since I’m young.
THE GREAT NEWS
I’ve got a long road ahead. But I’ve got a donor & amazing family & friends. A few months ago I didn’t have many options. Today I have a plan.
I am alive. I start tomorrow. Wish me luck!
Thank you.
For anyone who helped out with this, read above for some great news!
Here is the trailer for my upcoming documentary, Fifty-Two. The documentary itself will explain what it’s like to work with a non-profit while traveling on the Vans Warped Tour for Fifty-Two days. In the final product, you’ll see interviews, scenes, and tour life experiences on what can go on during tour. I’ve been asked many times, “What’s it like to work for a non-profit on Warped Tour?” I’m determined to answer that in this film.
If you are interested in supporting this project, you can purchase a 12x18 poster print for $12 (free shipping) here or visit http://deangelisphotography.bigcartel.com/product/fifty-two-film-poster-12x18.
Re-blog please! One random re-blogger will win a free 12x18 documentary poster.
PS. I recommend letting it load all the way first and leave comments to let me know what you think!
Hope everyone likes the trailer!
Here is the trailer for the documentary, Fifty-Two. If you are interested in ever touring for a non-profit, this might interest you! I’ve been working on Warped Tour for quite some time, documenting every chance I got.
-Adam
Shameless self-promotion.
We did a little filming last summer. Learn what it’s like to travel on a music tour while working for a non-profit.
-Adam
We are proud to announce that on behalf of the 11:11 A.M. team, $500.00 was donated to this cause. Read more about the Matt Cwiertny Memorial Foundation below and help them win the $25,000!
Over the years, 11:11 A.M., Matt, and his family have become great friends. When Matt passed away, it really hit everyone at 11:11 A.M. pretty hard. Matt and I would correspond through email and facebook from time to time and his battle with cancer was a huge inspiration for me. When I first heard about his family creating MCMF, I knew that we would be making a donation ASAP. When I heard about their recent project, I knew it was a perfect time to make a donation.
-Adam and the 11:11 A.M. Team
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Mozilla Firefox will be donating that amount to the charity that raises the most money between December 13th and January 11th… and how AWESOME would it be if our foundation won?! We can do this!!
Here’s the story:
Matt was a 22-year-old junior art director for Marshall Advertising, who loved the L.A. Galaxy soccer, A.S. Roma, the Flight of the Conchords, The Dandy Warhols, Jack’s Mannequin, The 88, and Will Ferrell movies, when he got a really bad case of mono. We thought he’d recovered until six months later when Matt started getting extraordinarily high fevers, his blood pressure dropped, and his blood counts cratered. His doctors were confounded, especially when they concluded it was not mono. It was only after he went into respiratory failure that his doctors at USC learned he suffered from EBV-induced Hemophagocytic Lymphohistiocytosis (EBV-HLH), a blood disorder affecting only 1 of every 1,000,000 persons (after a bone marrow biopsy, the doctors decided he’d had mono earlier). While EBV-HLH is not cancer, it acts and is treated like a cancer. The disorder destroys healthy blood cells, and is treated with chemotherapy, and a bone marrow transplant, if necessary. EBV-HLH often induces lymphoma, which it did in Matt. One month after his EBV-HLH diagnosis, Matt learned he was also battling NK T-Cell lymphoma, one of the most aggressive and least researched blood cancers there is.
In December 2008, Matt received his bone marrow transplant. While it temporarily put him in remission, his lymphoma returned in February 2009, and in June 2009, Matt learned it had returned in the form of an inoperable brain tumor. After chemo failed to put him in remission, Matt began radiation treatment. Before finishing it, he was readmitted to the City of Hope in late September 2009. At that time, Matt was in a weakened state, with his EBV levels extraordinarily high that it was debilitating to his liver and kidneys. Unfortunately, the doctors were unable to administer any treatment that could reverse the affects of the EBV and its impact on Matt’s vital organs… And at midnight on October 3, 2009, he passed away with his family surrounding him.
Please help us fund medical research for EBV and EBV-associated diseases, including blood cancers. We need cures and NOW. Let’s do this.
To learn more about the Matt Cwiertny Memorial Foundation and what we want to accomplish, please visit: http://www.mattcwiertnymemorialfoundation.com
Thank you!
A few weeks ago, our friend Tim Matthews posted a guest blog about his experience with cancer. He wanted to share this song he wrote with the 11:11 A.M. community. Read more below:
I think Survive is sort of our flagship song and we’ve dedicated it to everyone out there who’s been affected by cancer in any way, whether diagnosed or watching someone go through it and fighting with them.-Tim
Check out Tim’s band, Backyard Heroes.
8 Days. 8 Votes. 1 Million Dollars.
Tonight at Midnight (EST), December officially begins and so does the final round of voting for the American Giving Awards presented by Chase. TWLOHA is one of five charities with a chance to win $1,000,000. Your support helped us win Round 1 back in October and now we’re looking at the chance not only to win this money but to do it on national television, as the Awards will be broadcast nationwide on NBC.
Your support got us here and we need you now more than ever. Winning this money would allow us to take our message of hope and help on the road to more places and in more creative ways than ever before. Beyond that, we think the chance to speak to a national television audience is something pretty special.
You can vote once a day December 1 thru 8, so we’re asking for 8 votes over the next 8 days. If you want to do more, you can tweet, retweet, post on Facebook and Tumblr, even host a voting party at your school or in your community. There’s room to get creative. There’s room for your passion and your voice.
This thing started small and we’ve seen amazing doors open as we’ve continued to journey together. That’s what it’s all about…
To see how we would spend the money and to cast your first vote, go here.
Our friends at TWLOHA need your help. They have a huge opportunity to spread their message to millions. If you have a facebook account (who doesn’t?!), it will take less than five seconds, for 8 days, to vote for them to win $1,000,000.
HAPPY BLACK FRIDAY!
Check out our collaboration shirt with Veil Arms Clothing for only $20.00! All proceeds go towards raising awareness for young adult cancer research. Support a good cause and rock this awesome T-Shirt!
Sponsored by Hopecore.com and Indie Vision Music.
11:11 AM 11/11/11 Waiting in line for the Dear Jack Benefit on Flickr.
Anyone else have some cool 11:11 A.M. photos? E-mail us some links and we’ll try to reblog them. (1111aminfoATgmailDOTcom)
Dear Jack Benefit 11/11/11 on Flickr.
Rocking the 11:11 A.M. (http://1111am.tumblr.com) bracelet and Adam Elmakias Lens Bracelet (http://elmakias.tumblr.com) at the Dear Jack Benefit this weekend
Alison has some cool pictures up on her blog. Check them out! We are a fan of everything in this photograph.
