Karin Mallory is organizing a benefit concert for Accelerate Brain Cancer Cure to raise funds for research. The benefit concert with The Steel Wheels will be streamed live via Concert WIndow on March 28th. Click HERE for the concert video promo. Click HERE to buy your Concert Window tickets. In Karin's blog post below, she shares stories about the inspiring people who led her to take action against this disease.
“At least it’s not brain cancer.” Growing up, this was said in response to any hardship faced. A lost job. A broken leg. Unrequited love. “At least it’s not brain cancer.” At the time, I didn’t know many people who had cancer … certainly not brain cancer. The idea of uncontrolled, mutated growth in an area of my body that was responsible for the very essence of who I was seemed unfathomable. “At least it’s NOT brain cancer.” Until it is.
Until it’s my Dad, and it’s the discovery of a golf-ball sized tumor in his temporal lobe. Until it’s a diagnosis of Glioblastoma. The idea that my Dad, who had never missed a day of school or work because of illness now has brain cancer is inconceivable. It wasn’t supposed to happen this way. At 72-years old, he goes to the gym religiously 3 days a week. He never smoked. He takes his vitamins. He wears his seatbelt. He hasn’t even retired yet!
Because brain cancer accounts for just 2% of cancer death per year it is considered an “Orphan Disease.” It receives virtually no public funding. As of now, there is no cure for brain cancer. There is “standard care” which is surgery, radiation and chemotherapy, but there is no cure. For some diagnosed with Glioblastoma, like my Dad, this combination prolongs life. For others, death is shockingly quick. Despite these odds, those afflicted with brain cancer still HOPE for a cure. There are 120 different types of brain cancer … even non-malignant tumors pose a problem because of the delicate nature of the brain tissue. Complicating matters, the brain is protected by something called “the blood brain barrier.” It is fabulous when there is nothing wrong with your brain. But when there is … like a cancerous tumor … chemotherapy and other treatments have an incredibly difficult time passing through to reach their intended target. There is no known cause. Side-effects include: seizures, blindness, paralysis, cognitive and memory deficits, personality changes and language problems. Depending on where the tumor is located, any number of things might be affected. Sadly, brain cancer is the leading cause of cancer-related death in children.
Following my Dad’s diagnosis, I decided to do what I do best … gather people together, this time on behalf of a cause that is suddenly personal. I am producing a benefit concert for Accelerate Brain Cancer Cure which will be streamed live from the Bellows Falls Opera House in Vermont via “Concert Window” providing the opportunity for anyone, ANYWHERE in the world to make a “pay what you want” donation, watch some incredible entertainment, and at the same time help raise funds for brain cancer research.
My good friend Mark Green put me in touch with Accelerate Brain Cancer Cure. Their goal is simple: To find better treatments, and hopefully a cure for brain cancer. They would like to put themselves out of business.
“Faced with the adversity of her Father’s cancer diagnosis, Karin has chosen to do something. To organize, To act. And we, like many others, have been inspired to be part of it.” —Trent Wagler, The Steel Wheels
My Dad and I share a love of music, so it seemed only natural to create a benefit concert. The thing is, it is pretty difficult to raise much revenue via a concert. Concerts are expensive to produce. Unless … we could reach a wider audience. I learned about “Concert Window” last winter. I received an e-mail from one of my favorite bands, The Steel Wheels, indicating that a concert that had been scheduled in Ithaca, NY had been canceled due to a storm. At the last minute, they decided to try something new: a live stream on “Concert Window.”
The Steel Wheels are an incredible gospel and bluegrass influenced Americana band from Virginia. They don’t make it up to rural Vermont often, so I was thrilled to make a donation to watch them in the comfort of our home. It was fantastic. While brainstorming about the benefit concert, it occurred to me that if I filmed the event and streamed it LIVE on “Concert Window” I could certainly reach a much vaster audience, and raise additional money for the cause. The idea was born. The Steel Wheels said “YES”, and I asked a local percussionist, Todd Roach to open. His father-in-law died of brain cancer. That’s not why I asked him. I asked him because it is mesmerizing to watch him play the frame drum. He will be playing with Mac Ritchey who plays the Oud. Beth Lavinder will accompany them on several numbers. She is a hoop-dancer. Again, mesmerizing. She said “YES”, she would come up to Vermont from North Carolina to donate her performance on behalf of her dear friend … it is the anniversary of his death … he had brain cancer. I had no idea.
I sold raffle tickets throughout last summer, raising enough money to cover 100% of the production costs of the concert. $10,000. By selling raffle tickets. All money raised via the event at The Opera House will go directly to Accelerate Brain Cancer Cure. As of December 30th, The Opera House is SOLD OUT. Over 500 seats. The only way to see the event, even for locals, is via the live stream on “Concert Window.” A huge percentage of this income will also go to Accelerate Brain Cancer Cure.
Filmmaker Amy Stechler and I created a film (view film) to promote Concert Window viewership. Neighbor, renowned filmmaker KEN BURNS provided the introduction. Contributors to the film include musicians (CARLY SIMON, MIRI BEN-ARI, RHONDA VINCENT, MIRELLA CESA, THE BLACK LILLIES and RED MOLLY) and many who have a personal connection to brain cancer (DUKE’s DR. HENRY FRIEDMAN, Australia’s brain cancer advocacy group: CURE BRAIN CANCER FOUNDATION, David Menasche, author of “The Priority List,” brain cancer survivors JESSICA OLDWYN, author of the phenomenal blog: “Toom-ah? What Stinkin’ Toom-ah!,” Singer, actor, writer and comedian DANA SWANSON and local NEIL TAYLOR). There is even a famous elephant in the film. The boy who is lifted up on his trunk is the older brother of a young boy who died of brain cancer.
The film encourages viewers to spread the word about this benefit concert by emulating the way in which cancer spreads … by growing out of control … DIVIDING and MULTIPLYING. Word-of-mouth is a powerful way to spread the word. Because the event will be accessible via the live stream to anyone, anywhere in the world anyone who is affected by the disease can help publicize the effort.
The internet is an amazing thing … it connects us in ways that were previously impossible. In my effort to get word out about this benefit concert, I have spoken to people from all over the world. I tweeted my first tweet to Bryan Bishop, author of "Shrinkage: Manhood, Marriage, and the Tumor that Tried to Kill Me." I wanted to reach out to see if he would help get the word out about the benefit concert. His book, about his own experience with brain cancer is profoundly funny about a subject that is profoundly not-funny. I knew that he would be the perfect person to help get the word out about the benefit concert, because he loves music (he even has a chapter in his book entitled, “My feel-Good Playlist; or You’ve Got to Pay Your Dues If You Want to Sing the Blues”) and yeah, he has brain cancer. He offered to re-tweet the information.
My friend Mark Green refers to Liz Salmi as a “Bad-Ass Brain Cancer Advocate.” I concur. The posts in her blog, “The Liz Army” are the most honest contemplations that I have read written by a person living with brain cancer. And she is adamant about the difference between awareness and advocacy writing, “As people passionate about brain tumors, we can shout about the existence of brain tumors until we are blue in the face, but without follow up actions, an “awareness” campaign falls flat and leaves patients feeling helpless.”
I belong to numerous groups associated with brain cancer on Facebook including The Glioblastoma Support Group, Brain Tumor Talk and Brain Trauma Caregivers. These forums provide an amazing opportunity for members to reach out to one another for support, with questions, and they provide connection.
I have befriended countless individuals, organizations, bloggers and advocates …. ALL who have gobbled up information about this benefit concert. Paul Roselli who is working on a documentary film about brain cancer titled, “These Three Words.” Samantha Wright from Australia and her Facebook support group page called “Brain Tumour Ahoy.”
Jacob Walker is also from Australia. Following his diagnosis of brain cancer, Jacob was motivated to create a website called “Survivor Story” which is “a place built to connect, share and inspire others with stories of strength, determination and courage.” Six months after his most recent brain surgery Jacob participated in the New York City Marathon on behalf of B*Cured (an organization whose goal is to fund innovative brain cancer research.)
Paul Rodriguez is bicycling across the United States … for a second time. Motivated by the death of his brother, Paul is on a mission to raise awareness about brain cancer. “The Brain Chancery” blogger Charles Peacock who is working on a film “This Movie May Cure Cancer (the musical)” and June Outlier Fremer Mirassou whose blog “Living Life in Full” inspires strength and humor and honest reflection.
I have befriended Cheryl Broyles who is the “poster child” of Glioblastoma having lived 14 years with the disease and BethAnn Telford, a brain cancer survivor who, 7 years after being diagnosed with brain cancer competed in The Ironman World Championship. She encourages those with brain cancer to “Never, Never, Never Give Up!”
It is my hope that these, and the many, many, many other individuals who I have connected with over the past 6 months will spread the word. Inspiring others to Divide and Multiply.
It’s going to be a heck of a concert. A heck of an effort. On behalf of a heck of a good cause. The Steel Wheels Benefit Concert for Accelerate Brain Cancer Cure with opening act Todd Roach, Mac Ritchey and Beth Lavinder Streamed live on Concert Window from The Bellows Falls Opera House Saturday March 28, 2015!