Earlier I wrote about MBCN, a national, independent, patient-led, nonprofit advocacy group for people with metastatic breast cancer. Here are five other groups worthy of wider recognition. (What group(s) would you suggest? Leave a comment and let me know!)
Metavivor: Making a Difference for People with MBC
In June 2008 Dian “CJ” M. Corneliussen-James attended a breast cancer seminar with three friends. Numerous attendees rose in turn to celebrate their survivorship. They credited their status to being vigilant, courageous and having the will to live. The moderator said it was wonderful breast cancer was no longer a secret and invited all of the survivors present to stand.
“My friends and I looked at each other. We were definitely ‘vigilant,’ we were certainly ‘courageous’ and our ‘will to live’ was absolute,” recalls Corneliussen-James. “But … no longer a secret?’ Survivors? We shook our heads. Those terms did not pertain to us. Should we stand? Should we speak out? It was clear this was going to be like so many other conferences.”
Corneliussen-James and her friends decided they would speak out. They formed Metavivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.
“We ask that the organizers of breast cancer conferences include speakers on metastatic breast cancer,” Corneliussen-James says. “We ask that they have literature available on the disease and that they receive and respond in detail to questions asked concerning our condition. We ask that in addition to applauding the 2.5 million ‘survivors,’ those valiantly battling stage IV breast cancer also be applauded. And we ask that there is a moment of silence for the millions who have died of the disease. “Further, we ask that ‘survivors’ be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive this disease and persons struggling with stage IV breast cancer might well be in the audience. ”
When people are donating to cancer research, Metavivor asks them to consider supporting organizations that have a posted policy to award a specific share of monies received to research aimed at eradicating cancer that has metastasized.
Last year the Annapolis, MD-based group raised $50,000 to fund the work of Dr. Danny Welch, a leading metastatic researcher who has observed that MBC accounts for 90% of the morbitity/mortality but gets 5% of breast cancer funding.
The Metavivor financial statement is simple: $50,000 raised and 100 percent of those funds investedin MBC research. They are holding a fundraiser this week.
Driving Miss Darby: Supporting Clinical Trial Participants
In 2004, at age 34, Darby Steadman presented with DCIS. In 20o7, she learned her cancer had metastasized.
Steadman participated in Dr. Leisha Emens’ breast cancer vaccine trial several years ago at Johns Hopkins.
“We (all the trial participants) were all at Stage IV by that point,” she said. “It was our last hope.”
Steadman lived within driving distance of Johns Hopkins, but many of her fellow trial participants traveled much further. “I learned that many of them had maxed out their credit card bills to pay for their airline tickets, meals and car rentals,” she told a reporter. “Others commuted, five, six, seven hours each way and would head back the same day so they [could minimize time off from work].”
Steadman and her friends created the foundation to defray clinical trial participants’ travel, lodging and medical expenses. The groups summarizes its goals as: Awareness, Accrual & Assistance.
Chronic Disease Fund Helps Patients Foot Their Bills
Established in 2003, the Chronic Disease Fund ensures that underinsured patients have access to the new, breakthrough medications and treatments that help patients live longer, happier, more productive lives.
Chronic Disease Fund quickly became the largest copay organization in the country. In 2009, it helped more then 60,000 people get the medications they needed.
The Abigail Alliance: Getting Promising New Drugs to Market Sooner
Abigail Burroughs died at age 21 because she couldn’t get an experimental cancer drug. After Abigail’s death, her father Frank Burroughs, formed the Abigail Alliance for Better Access to Developmental
The Abigail Alliance is committed to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. It promotes creative ways of increasing expanded access and compassionate use programs.
The group was recently featured in what Burroughs calls one of the best pieces done on the group. The Abigail Alliance is the second interview at http://www.biocenturytv.com.
Sisters Network: Stopping the Silence
Karen Eubanks Jackson is the founder & CEO of Sisters Network Inc. (SNI), the only African American breast cancer survivorship organization. She is a 15-year breast cancer survivor.
She created SNI in 1994 in response to a lack of sisterhood in traditional organizations, a staggering breast cancer mortality rate for African American and limited culturally sensitive material.
Jackson’s primary motivation was to break through the silence and shame of breast cancer that immobilizes African American women, restricts their ability to receive support services, interferes with early detection, and ultimately affects their survival rates. SNI currently has 42 survivor-run affiliate chapters, serving more than 3000 members and associate members nationwide.
The 12th Annual National African American Breast Cancer Conference will take place May 12-15, 2011 in Baton Rouge.