Each of the organizations list below are ones that I’ve had some personal connection with or has been recommended highly by individual(s) that I trust. The descriptions are wholly my own perceptions and I’ve received no incentives to list any of the organizations. I’ve ordered the list alphabetically, not in any hierarchy of usefulness or how much I like each one. I’ve created this list and will periodically review and update it, but please don’t think that I’ve verified the services on an ongoing basis. With those disclaimers, read on …
305PinkPack — this is my favorite local organization 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’m not aware of all that are available, 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,
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.
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.
Compassion & Choices — organization dedicated to improving care, expanding options and empowering everyone to chart their end-of-life journey.
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. 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.
Friends of Cancer Research — a non-profit assisting with collecting and interpreting data with the patient’s needs at the center. They have a great research advocacy training program as well!
Gilda’s Club South Florida — this organization serves men, women and children affected by cancer. There are many chapters of Gilda’s club all over the US and I’ve listed the one closest to me, which is in Fort Lauderdale. This particular chapter provides support groups, healthy living workshops, educational programs, and social activities, all free of charge. While I don’t see that there is a particular focus on Stage IV, the types of services offered are ones that all cancer havers can benefit from.
Hello Gorgeous — this organization was started by a husband and wife who were affected by cancer. They realized very quickly that when a woman is diagnosed with cancer, the person in the mirror no longer looks like what she’s used to seeing. A special day for a cancer patient involves beauty services and products designed to help each individual adjust to the ravages of cancer on the body by addressing how to look better in light or in spite of the havoc that chemo and targeted therapy has on the body. The organization relies on local spas and salons to participate and may not be available in all areas.
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.
Melanie Lynn Penn Design — so many cancer survivors and those of us with incurable cancer take the experience and make something beautiful. Melanie definitely falls into that category. She uses her artistic ability to make the most beautiful and poignant images that reflect not just the outer beauty of a person but also what makes them personally amazing. Her skill in making something unique and meaningful from an outline and a collection of words is nothing short of magic. The link under her name is the best place to see her work and correspond with her; she also has an Etsy shop.
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.
Project Life — founded in 2021 by Lesley Glenn, this organization is a virtual wellness house for those of us living with Stage IV Metastatic Breast Cancer (MBC) and their caregivers. I’ve been honored to serve on the leadership team as the Director of Mentorship and I also run monthly Legal Clinics for the members. The area of survivorship for those of us with MBC has long been sidelined and as we are all beginning to live longer with MBC, it is important to recognize the suppose the concept of truly living with MBC.
Our MBC Life — a podcast for and by metastatic breast cancer patients, highlighting the people who stand out for their advocacy efforts!
S.H.A.R.E. — this organization provides dedicated, experienced support for women facing breast,
ovarian, uterine or metastatic breast cancer. The 24 hour help like is staffed by real patients and callers are connected to those who share their experiences. This organization is like a gigantic support group for all ages and walks of life at the tip of your fingers — all services are now available virtually.
The Cancer Couch Foundation — this organization was founded by Rebecca Timlin-Scalera, PhD, a metastatic breast cancer patient and exists to raise awareness and funding for metastatic breast cancer research. All funds raised are matched and 100% of the funds are donated directly to Dana Farber and Memorial Sloan Kettering, earmarked for metastatic breast cancer research.
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.
The Mesothelioma Center — According to a 2016 study, environmental factors can play a role in the risk of breast cancer including exposure to ionizing and non ionizing radiation, pesticides, polycyclic aromatic hydrocarbons and metals. The Mesothelioma Center has created a breast cancer resource regarding the link between asbestos exposure and breast cancer. Please take a look if you think you might have been exposed to asbestos and that might have played a role in your breast cancer diagnosis. This organization works 1-on-1 with patients and individuals to help them find care and support, at no cost to patients.
The Tutu Project — this organization exists to raise funds to give grants to men and women going through breast cancer treatment. The pictures utilized as parts of their campaign are of a middle aged man wearing a pink tutu and not much else. The images are provocative and remind us that men do get breast cancer too and the tutu looks as incongruous on a man as it does on a woman in this context. This organization doesn’t focus just on metastatic breast cancer patients, but no one is excluded so long as there is a breast cancer diagnosis.
Twisted Pink Charity — this organization exists to extend lives and improve quality of life by funding MBC research. Twisted Pink was founded by two sisters who are breast cancer survivors and they set a wonderful example of how the early stage breast cancer community can support the metastatic community.
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.
In light of the financial toxicity of cancer treatment, many families are left with very little disposable income after co-pays, transportation, and other costs of treatment are paid outside of the normal bills. Plus, many households go from two (2) incomes to one (1) income, plus a small amount of disability. The organizations listed below create memorable vacations for patients and their families so that they can leave cancer behind for a little while and create lasting memories. Each organization focuses on different things and are each valuable in their own way — be sure to read the fine print!