Until one enters CancerLand, one doesn’t really understand how fractured and dysfunctional the system can be. Each of the extraordinary individuals below has stepped up to help challenge the system, for themselves and for others.
Cancer advocates ROCK!
Some articles on advocates and the important work they do:
(Please browse Real People, Real Stories for many more!)
Danielle Burgess is the Communications Director for FightColorectalCancer.org. Diagnosed with colorectal cancer as an adolescent, she was re-diagnosed at the age of 25.
Fit and seemingly healthy in her forties, Robin was stunned by a diagnosis of 3C rectal cancer with a very grim prognosis. Even worse, her province in Canada refused her state of the art access to chemotherapy. Robin’s journey is nothing short of remarkable. You can find her book on Amazon (a must read!) meet her on-line–she is the host of #CancerBookClub.
All advocates aren’t patients! Shantel VanSanten lends her celebrity to Lung Force in memory of her grand mother. You can read about Shantel’s efforts here.
Quite simply, Bobbi de Córdova-Hanks an amazing person. She is a local legend, known by the media as the “First Lady of Breast Cancer Survivors” in Jacksonville, Florida.
At the ripe young age of 80, she still works tirelessly at the helm of Bosom Buddies, a breast cancer support and education program she founded 28 years ago, shortly after her first diagnosis of advanced breast cancer. It has not been easy for this warrior, especially when she was faced with two other primary cancers along the way.
Consano: Medical Crowd Funding
Consano means “to heal” in Latin and it’s an innovative not-for-profit medical crowdfunding platform. The model empowers individual scientists and the public to back the research they feel is important. Molly Lindquist is the founder.
Click here to read more about Molly.
Amy Black , an award winning tattoo artist based in Richmond, VA is absolutely inspiring as she uses her art to nurture the healing process faced by men and women as they seek to embrace themselves post mastectomy. Amy has played a critical role in the reconstruction process serving clients from the United States and around the world.
Amy realized that #CancerCosts impact everyone, particularly when it comes to post mastectomy reconstruction. As a result, she founded a not-for-profit, the Pink Ink Fund in 2011, to provide financial assistance. Amy is committed to educating individuals affected by breast cancer, future technicians, and the medical community regarding nipple and areola tattooing. You can visit Amy’s Gallery here .
Travel, Volunteering and Cancer with Terry Wingham and A Fresh Chapter
Terri Wingham joins us to share how crossing the borders of her own cancer story gave rise to her vision of helping others begin a fresh chapter in their own lives through meaningful cross cultural volunteer experiences. Visit her site at A Fresh Chapter.
#GreyMatters with Tracey Gamer Fanning
Tracey shares her journey with a brain tumor, her remarkable results and her passion for helping others.
Chris Lewis of Chris’ Cancer Community
Chris is a prominent patient advocate in the UK. He runs a blog with weekly posts, consults with various cancer groups, and has just started a charity aimed at reducing the social isolation inherent in a cancer diagnosis.
His charity, in conjunction with C4CMobile, donates 10% of one’s mobile cell phone bill to patient support. 100% of this money goes to patients (not marketing or administration!)
Beth Caldwell is a wife and mom, a former civil rights attorney, and a metastatic breast cancer activist. Beth is also a founding member of MetUp, an activist community committed improving the lives of women and men living with metastatic breast cancer through direct action.
Beth lives with metastatic breast cancer, a diagnosis that carries a 33 month average survival rate which makes it a terminal disease. Beth is currently challenging a decision by her insurance company to deny her access to a drug cocktail that has shown great promise in clinical trials given the characteristics of her disease. She joins us to discuss what led her to this point and the many ways that #CancerCosts along with the current state of MetUp activity.
Terri Coutee, founder and CEO of the DiepCFoundation, is a two time breast cancer survivor who is relentless in her efforts to ensure that both women and men are educated and equipped to make post-mastectomy reconstruction decisions. Terri joined us to discuss her role as a Breast Reconstruction Awareness Day Affiliate.
Susan Rahn, a metastatic research and medical aid in dying advocate, living with Stage IV Breast Cancer.
Susan was diagnosed with Stage IV Invasive Ductal Carcinoma Breast Cancer in August of 2013 after a CT scan looking for kidney stones revealed a lesion in her ribs. To say she was shocked is an understatement (!), considering that her mammogram had been clear 9 months prior.
Susan is an incredible advocate for metastatic research as well as the issue of medical aid in dying. Susan joins us on #AllThingsCancer to discuss the barriers to metastatic research, the legislative successes on the medical aid in dying front, and her newest project the The Underbelly.
Oliver Bogler, PhD and the SCAR Project
Oliver Bogler has been an outspoken advocate for male breast cancer and a participant in David Jay’s stunning SCAR Project. This interview, co-hosted by Michael Kovarik who is living with metastatic breast cancer, covers a wide range of topics.
There are actually two film clips. The first, and the longest, is the body of the discussion. But our discussion ran on, and remained interesting, so we hit the record button again to capture the remainder of the conversation. This is a great interview. Enjoy!
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