I had the privilege of spending two amazing days with 130 members of the LIVESTRONG Young Adult Alliance in Austin, Texas recently. These admirable individuals and organizations are doing amazing work for those affected by cancer and their loved ones, particularly those 15-39 – seventy thousand of whom are diagnosed each year.
Kudos to the Lance Armstrong Foundation, and CEO Doug Ullman, for once again seeing a need and acting to meet it. By creating this coalition to improve the survival rates and quality of life for young adults, they are helping to fill the gap in care that can often leave this group dangling between the worlds of pediatric and adult oncology, making it difficult to know where they fit.
The Alliance formed three years ago with the development of a Progress Review Group (PRG) - a call to action, basically – which still guides its work. Four task forces do the main work of the Alliance in-between annual meetings: Science, Membership, Standards of Care and Awareness. Through these work groups, the Alliance conducts research, brings new members into the group, helps raise awareness about cancer prevention and services, and shares information about the latest science-based cancer research and treatment options.
The two-day conference consisted of keynote presentations by Drew Olanoff of Blame Drew’s Cancer and Adam Garone, founder of Movember an organization encouraging men around the world to grow moustaches during November to raise money for men’s cancers, primarily prostate; breakout sessions on harnessing the power of social media, healthcare reform, and survivorship issues among many others; and task force and brainstorming meetings on a variety of issues from the PRG.
I was so inspired by the people around me. From Drew and Adam, both of whom have pledged to raise upwards of a million dollars for the Alliance, to so many others who are doing so much to help young adults and further the cause of survivorship:
Brad Ludden – the professional kayaker who started teaching kayaking to kids at a cancer camp near his home in Montana as a way to give back, and then discovered that while there are tons of programs for children with cancer, young adults were practically ignored. Thus First Descents was born in 2000 when Brad was only 18. He realized the healing power of the outdoors and the confidence that can come from paddling a class III rapid or scaling a rock wall, and tons of young adult survivors have benefited from his vision ever since.
Marcia Donziger – struck by ovarian cancer at age 27, Marcia went in for surgery to remove a cyst on her ovary, and woke up to discover that her doctor had performed a complete hysterectomy when he discovered cancer throughout her pelvic region. Married at the time and trying to start a family, Marcia was devastated, and her marriage eventually ended as a result of her diagnosis. Marcia remembers how difficult it was to keep in touch with friends and family about her treatment and condition, and being overwhelmed by the number of calls she received during that time. Inspired by another cancer patient who used a website to keep people in the loop, in 2006 Marcia founded MyLifeLine.Org providing free websites to cancer patients so they could easily keep their loved ones informed about what was going on with them and get support during treatment.
Matthew Zachary – diagnosed with brain cancer at the age of 21 while still in college, this concert pianist and composer lost the use of his hands for a time during treatment – a devastating blow to his future career plans. At the time of his diagnosis there were few resources for young adults living with this disease, and in 2004 Matthew founded Steps for Living, the precursor to i2y - I’m Too Young for This Cancer Foundation, an organization that connects young adult survivors with resources, produces a weekly online radio program called the Stupid Cancer Show, and serves as an advocate for the AYA (Adolescents & Young Adults) community primarily through the harnessing of social media.
Heidi Adams – learned she had cancer when she was in her twenties, and as she navigated treatment, she saw very few others who looked like her. Most of the chairs in the chemo room were filled with silver-haired grandparents who told her she was too young to have cancer. When a thoughtful nurse introduced Heidi to two other young adults in treatment, they gravitated toward each other like flies to honey, sharing their frustrations, struggles and encouragement. Both of Heidi’s lifelines relapsed and died from their disease, and Heidi started Planet Cancer in their memories. The organization provides an international network for AYAs through a social networking website, retreats and a soon to be published book.
Jonny Imerman – lost a testicle to cancer at age 26. While fighting cancer, he received tons of support from family and friends, but longed to talk with someone else who had been through what he was going through. He wanted to ask for advice from someone who understood what it was like to have testicular cancer at such a young age. In 2003, he founded Imerman Angels to connect cancer “fighters” with cancer survivors who were like them. The organization strives to match patients based on age, diagnosis, geographic location, gender and even religion for those to whom that is important.
I have known some of these individuals for a while, and met others for the first time at this meeting. I benefited from many of these programs or ones like them during my diagnosis, treatment and survivorship, and thank God that these individuals were inspired to do something for this community so their services would be around when I needed them. I often say that Lance Armstrong getting cancer is the best thing to ever happen to those of us who have experienced this disease. He has done so much to advocate for research and funding and to define survivorship. Just being in the LIVESTRONG offices in Austin was inspiring to those of us who participated in this meeting. Seeing Lance’s seven yellow jerseys hanging in the foyer, meeting Kelli Craddock, the young adult guru on staff, connecting with so many others who wear the yellow wristbands not because it’s trendy, but for a deeper reason, was profoundly inspiring to me.
I went to Austin to push my agenda. I don’t necessarily feel the need at this point to start my own non-profit when there are so many already out there doing good work for this population, but I did want to raise awareness about the unique needs of single people who get cancer, and encourage these organizations to do more to serve this audience. I lobbied First Descents, Camp Mak A Dream and Planet Cancer to consider singles-only sessions of their programs, promoted my online survey to better assess the needs of this population, and raised the issue as one that the Alliance should focus more attention on in the future.
My time in Austin was a huge success from many perspectives, and I feel so privileged to be able to be a part of this amazing group. Because the LIVESTRONG Foundation is a catalyst for so much of the work that has helped so many, I want to close with their manifesto, which has been a source of strength:
The Manifesto of the Lance Armstrong Foundation
We believe in life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is the Lance Armstrong Foundation.
We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.
We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.
We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.
We’re about the fight.
We’re your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is the Lance Armstrong Foundation.
Founded and inspired by one of the toughest cancer survivors on the planet.