Roadmap to MBC Organizations

I just had an amazing podcast recorded with my dear friend, Emily Garnett‘s, husband, Christian Garnett with the “Our MBC Life Podcast” and we talked about her projects and his commitment to carrying on her legacy, particularly within the MBC Community. One of her projects was to create a binder for the newly diagnosed with the information we all really need to know; and one of those things the newly diagnosed would need to know is a primer about MBC organizations for those who want to get involved in various levels of advocacy.

This blog post is my effort to create something like that for you all with Christian’s permission. No organization listed here has given me any incentive to include them, I’m always interested in hearing about other organizations, and all explanations or description are 100% my own. If anyone disagrees with my descriptions, please don’t hesitate to let me know! Each organization is listed alphabetically, not in order of how much I love each one.

305PinkPack — this is my favorite local organization here in Miami and it exists to support women through active cancer treatment by assisting with rides to treatment, child care, meals, housecleaning and whatever else a patient needs to navigate chemo, surgeries, radiation, and adjusting to the life of a cancer haver. I include this organization as a reminder that every different location will likely have a local organization focusing on meeting needs in the local community–I’ve gotten involved as a Stage IV advocate to assist those with advanced disease and the founder has been 100% open to learning how to include those of us who will always be in treatment. I’m not aware of all that are available in every location, but would recommend focusing on non-profits started and maintained by breast cancer havers!

AdvancedBreastCancer.net — this is one of the disease specific websites of HealthUnion, LLC and I’m proud to say that I’ve been a content contributor for them since May of 2019. HealthUnion has over twenty (20) websites focused on different diseases and employing members of each community to write and moderate discussions. While I’m biased towards the advanced breast cancer site, the rest of them are also excellent. In addition to the articles and discussion opportunities, the website also contains a trial finder and are always expanding and adjusting to meet the needs of the metastatic community as those of us who are advocates continue to educate them on what the community wants and needs.

Annie Appleseed Project — this is my go to for alternative or complimentary therapies and explaining pros and cons. They have events and seminars and are a great organization to support if this is your passion. The services and focus aren’t just on advanced cancers.

Breast Cancer Research Foundation — this organization does exactly what it says, it raises funds for research. One thing that I really like about them is that they allocate large chunks to metastatic research, some years approximately 50% of the funds they raise, which is in the millions. My dear Emily Garnett participated with her sweet son in a campaign or two and I loved seeing her smiling face.

Connect IV Legal Services, Inc. — this organization is my own non-profit, where I recruit lawyers to do pro bono (a/k/a free) legal services of all kinds for the metastatic community. I’m a little partial to it, since it’s my own brainchild; at the same time, the need for affordable legal solutions is so very needed. Some areas have local groups providing the same services and my non profit is absolutely not intended to replace any of those groups, but to supplement options.

Dr. Susan Love Foundation for Breast Cancer Research — headed by one of the world’s most respected research scientists, herself a cancer survivor, this organization funds very interesting breast cancer research. Their budget isn’t as large as BCRF, but Dr. Love is a force to be reckoned with!

Florida Breast Cancer Foundation — I’m in Florida, so here’s another Florida based organization focused on research, advocacy and education. I’m particularly partial to the grassroots, patient led organizations and this one is no different. Metastatic research and education isn’t a large focus, but we do get a nod or two.

Facing our Risk of Cancer Empowered (FORCE) — for everyone with a germline or inherited mutation like BRCA, ATM, etc., this organization is focused on educating everyone on their personal and familial risk of breast cancer, as well as providing guidance on addressing conversations with family members about their own risks once a patient has discovered a genetic link. They have seminars and information on their website and their founder is a great speaker.

For the Breast of Us — this organization is focused on elevating the stories of women of color and addressing the disparities that exist in breast cancer research, advocacy and treatment. The focus of this organization is on all stages of cancer; however, they do an excellent job including the stories of metastatic women of color as well.

Lacuna Loft — this organization is focused on supporting young women to not just to survive, but to thrive during and after breast cancer treatment. While many of their offerings are focused on survivors, there is a lot of room for metastatic patients to receive benefit from their services. I particularly love their writing workshops and book clubs. This organization is focused on those cancer havers diagnosed under the age of 40.

Living Beyond Breast Cancer — admittedly, this is one of my most favorite organizations because of their commitment to listening to the metastatic community and delivering what the community needs. Each and every person I’ve dealt with in the corporate office are dear dear human beings and I am honored each time I’ve been able to collaborate with them. LBBC has many training programs focused on various different groups and they have embraced the metastatic community wholeheartedly. Their conferences are exemplary, the education is spot on, and their supportive help line and other assistance programs are some of the best.

Metavivor — this organization was founded by a group of metastatic patients and their vision has lived on despite the fact that only one of the original founders lives today. The focus of Metavivor is raising funds for research and advocating for the needs of the metastatic community. Each year, Metavivor organizes a Stampede where metastatic advocates from all over the US gather in Washington DC, march on the capitol and advocate for various policy and legal changes to the Congresspeople and Senators. I’ve been proud to participate in person in 2018 and 2019, and to head up the Florida team virtually for 2020. For anyone interested in research and legislative advocacy, this is your organization to work with!

METup — this organization was founded by two LBBC trained advocates, Beth Caldwell and Jennie Grimes and is patterned after the AIDs activist organization, ACTup. The goal of METup is to provide direct action opportunities, including but not limited to, Die Ins, where attention is drawn to the many men and women who will die each year in the US. As of 2020, approximately 116 men and women die of metastatic breast cancer in the US. If you are interested in more direct action, protests, boycotts, etc., this is the organization for you.

Triage Cancer — founded by two lawyers, this organization is an amazing resource for all kinds of legal issues. They offer checklists and seminars and webinars and a variety of legal resources so needed for the cancer community. The founders literally wrote the textbook on Cancer Law and I have my reference copy marked up, highlighted, and with important passages flagged as I work to guide fellow metastatic cancer havers through their legal issues.

Young Survival Coalition — this organization is focused on those women diagnosed with breast cancer before 40 and offers a lot of great information about fertility preservation and other issues uniquely faced by younger cancer havers. Their conferences are truly exemplary and they do a really good job of addressing a wide variety of issues facing those of us whose lives are interrupted mid-stream by a cancer diagnosis.

I’m sure I haven’t included a complete list of all the great organizations out there — tell me, which ones would you add?