In 2012 we launched Hope Scarves in New Orleans at a Young Survival Coalition Conference. A tearful woman visited our booth and wanted to share the story of her young daughter Lauren who had died of breast cancer. I respectfully took the story and hugged this weeping mom. Then, I tucked her story away and mentioned to my friends, “whoa. We can’t use that story – we are hope scarves. Not sorry for your loss scarves…” And we went back to collecting happy stories. Turning our back to the reality of breast cancer for the easier path of celebrating survivors and passing along scarves and happy stories.
Then, in 2014 I faced my worst fear when, nearly seven years after my stage 2 diagnosis, cancer metastasized to my bones. And, I realized how incredibly short sighted we had been only finding hope in the happy stories. I came to understand that hope comes in many forms – not just when you “beat” cancer and put it behind you. But in living in the face of any kind of diagnosis.
I also realized scarves and stories are inspiring. But, they aren’t going to save anyone’s life. So, we expanded the mission of Hope Scarves to “Share scarves, stories and hope with people facing cancer.” We recognize hope comes in many forms – and for us this would now include research.
The Hope Scarves Metastatic Breast Cancer Research Fund was created in 2015. Our first donation was to Brown Cancer Center at University of Louisville for $50,000 to help determine the effects of simultaneous suppression of estrogen signaling and a key metabolic enzyme known as PFKFB3 on sugar metabolism, growth and survival of metastatic breast cancer.
This year, with the help of hundreds of donors we donated $100,000. Two $50,000 gifts went to:
- Memorial Sloan Kettering – Looking specifically at a new class of MBC drugs called CDK 4/6 inhibitors with the tools of DNA and RNA sequencing to to understand and overcome resistance mechanisms.
- Dana-Farber Cancer Center at Harvard – Researchers are working to create a “Resistance Atlas” for ER-positive metastatic breast cancer, which should help inform treatment decisions for individual patients and propel the development of new combination treatment strategies. The MBC Project, which Hope Scarves is an Advocate Partner, is a vital part of this ongoing work, providing access to an unprecedented database of genetic information from patients with MBC.
What’s even more exciting is each institution matched our donation 1:1. Making our total donation $200,000.
AND, as if that wasn’t enough… this year we helped found the Metastatic Breast Cancer Research Collective (The MBC Research Collective). Recognizing small donations here and there aren’t going to move the needle fast enough, we pooled our money together to make a bigger impact. The founding partners in The Collective are Twisted Pink, The Cancer Couch and Hope Scarves. Together, we donated $1.2 million to metastatic breast cancer research this year. We are excited to welcome new partners to The MBC Research Collective to help grow our investment and get even more money into the hands of the most cutting edge researchers working to find more treatment options for those living and dying of metastatic breast cancer.
I am incredibly proud of our organization’s ability to expand our mission to include research. I hope other cancer organizations (breast cancer in particular) will recognize they can dedicate a portion to research too. Teaching us to fly fishing, practice yoga and meditate are helpful to live life over cancer – but, think how significant it would be if each of these organizations also made a commitment to MBC research. If you work, volunteer or support an organization such as this – pass along this post and give them my email address, firstname.lastname@example.org. I’d love to share how we expanded our mission and became a more meaningful, thoughtful, significant organization as a result.
I am grateful for all the donors who made our $200,000 donation to research this year possible. I am grateful for continued stability in my health. I had a PET scan in November that showed continued stable disease. In the midst of our joy, I realize I am one of the lucky ones. Research isn’t moving fast enough to extend the lives of many people. I’m not sure if we can change that… but I’d like to try.
You can give directly to our research fund – where 100% of donations go directly to scientists working to find more treatment options for people with MBC. Most of all, thank you. I’m grateful to share this update and look forward to sharing more information about how we are making a difference for people facing MBC.
Scarves, stories, research… hope.