Giving Recommendations

Many of you have responded to my many posts on various social media outlets about giving during October and all year round. As promised, I am writing to provide all of you with a list of options for giving that would benefit actual patients living with Stage IV Metastatic Breast Cancer (MBC) and I’d be so very interested in hear from each of you if there are other organizations I should add to my list — just don’t be shocked if I have a thing or two to say about those organizations I really don’t trust and why.

First let me say thank you to those of you who genuinely want to give to reliable organizations that benefit patients. It is so very important for all of us to know where the funds we donate are actually going, that the funds will be used for the purpose we anticipate, and that patients or research or whatever the cause is actually benefitting from our donations. I struggle with a feeling of betrayal in this context since I thought the funds I donated and raised for years were actually going towards research, towards finding a cure; it was after my own diagnosis that I learned the truth about many organizations, that they were lining their own pockets, supporting “awareness” campaigns, and generally not actually putting the funds they raised towards finding a cure we so desperately need.

I’ve organized my own recommendations below by categories and I am always interested in learning more about organizations that are doing good work!

Directed Research Options

• Metavivor — this non-profit, earning 3 out of 4 stars from Charity Navigator, utilizes 100% of the funds raised to fund research projects focused on Stage IV Metastatic Breast Cancer (MBC). The grants, awarded by a crack team of researchers and patients, allow scientists to answer important scientific questions so that they can continue to the much larger clinical trials involving cell lines, mice, and eventually people. How does Metavivor actually allocate 100% of the funds raised to research? Overhead is funded by grants and the rest of the work is done by volunteers living with or supporting those living with MBC.
• Breast Cancer Research Foundation — historically, the BCRF has divided its grants with about half going to research affecting people diagnosed with early stage breast cancer and the other half going to research affecting those of us with MBC. This nonprofit has earned high marks from Charity Navigator and you’ll see from perusing its tax returns, that a reasonable amount of the funds raised are allocated to overhead. There are also some specific directed options listed on their website. While I don’t know as much about how the decisions are made involving grants, this is an organization that does a good job of being transparent about where funding is allocated.
• Florida Breast Cancer Foundation — for those of us in Florida, the FBCF is an option to fund local researchers and projects benefitting Floridians affected by breast cancer. I am assured by the current CEO that it is possible to direct funds to MBC research and this nonprofit has also earned high marks from Charity Navigator.

Direct Services to MBC Patients, National

• Project Life — a virtual wellness house for those of us living with MBC by people living with MBC. Outside of research, which is keeping me and so many others alive, this is my favorite organization to recommend. Yes, I’m biased since I’m on the leadership team and run the best MBC Mentorship Program around. At the same time, I can personally tell you how much we stretch every dollar to continue to serve the concrete needs of MBC patients and their loved ones within the five dimensions of wellness — Physical, Emotional, Social, Spiritual and Financial. You won’t find us on Charity Navigator since we operate under a fiscal sponsor, SEE, which has the highest rating possible. At Project Life, we are filling the gaps between what MBC patients need and what they are offered by our broken medical system. As we often say to new members, Welcome Home.
• Infinite Strength — an organization recently gone national that supports single mothers with children under 18 living at home with expenses while undergoing treatment for MBC. While this organization is not yet listed/rated on Charity Navigator, I know enough about the founder and their services to recommend them highly.

Direct Services to All Breast Cancer Patients, National

• GRASP (Guiding Researchers and Advocates to Scientific Partnerships) — also under a fiscal sponsor, you won’t find GRASP on Charity Navigator, but as a member of the Board of Advisors, I can personally attest to all the blood, sweat and tears that goes into making the magic happen to connect researchers and advocates. Can’t say enough about how hard Julia, Christine, and Marlena work and how vital this work truly is. GRASP doesn’t only serve MBC patients or only breast cancer patients, but exists to bridge gaps and facilitate partnerships, extremely vital in the efforts to eradicate cancer.
• SurvivingBreastCancer.org — an organization near and dear to my heart and, yes, I’m on the board and chair the MBC Leadership Committee. We’re not on Charity Navigator as of yet, but I can personally attest to all the work that goes on behind the scenes to accomplish our mission empowering those diagnosed with breast cancer and their families from day one and beyond.
• Living Beyond Breast Cancer — LBBC does a wonderful job of listening to the varied needs within the breast cancer community and working to meet those needs. From the educational resources, to conferences, to advocacy training classes like the Hear My Voice program focused on the MBC Community, to the helpline, to the partnerships and incubation of other organizations, LBBC does an excellent job of standing in the gaps between patients and our broken health care system.
• FORCE (Facing Our Risk of Cancer Empowered) — for anyone who carries a genetic predisposition for cancer, whether you have cancer or not, this is the best organization I’ve found for information, support, and opportunities to get involved with research and advocacy targeted at this specific population. Given 4 out of the 4 stars possible at Charity Navigator, this organization is highly respected and very reliable.

Direct Services to Black Breast Cancer Patients, National

• The Chrysalis Initative — while not yet rated on Charity Navigator, this organization, which is focused on education and peer support specific to the experiences of black women, is extremely important and well regarded.

Direct Services to Young Women diagnosed with Breast Cancer, National

• Young Survival Coalition — earning 4 out of 4 stars on Charity Navigator, this organization focused on the experiences of young women with cancer is vital. For those of us who are diagnosed with cancer before our lives have truly unfolded, our needs are simply different and YSC stands in that gap.

Direct Services to All Breast Cancer Patients, Local

• 305PinkPack — while not yet rated on Charity Navigator, this organization serves women in the Miami area affected by breast cancer with those practical needs like transportation, wigs, education, meals, house cleaning, child care, support and opportunities to be more healthy during cancer treatment. Well regarded, trusted, and inclusive of those for whom Spanish is their heart language.

This is certainly not an exhaustive list and I hope it gives you a place to start if you are considering a donation this Pinktober and all year round to help those of us who are living while dying from MBC.