April has been a month of milestones, emotions, and mission moments. Earlier this month, I saw the realization of a project I’ve been working on for years. JAF officially took our Universal Community Oncology Resource Network (UniCORN) public, fittingly on National Unicorn Day on April 9. To do that, we made two stops in Boston, first at Beth Israel Deaconess (BID) and second at the American Cancer Society’s Hope Lodge.
The JAF team arrived at BID with UniCORN care packages to hand out to patients and families and leave behind items for treatment teams to share with patients. We expected to be the ones that brought joy and love during our visit, which may have been true. However, the outpouring of love we received was like nothing we had ever experienced during a cancer center/hospital visit.
BID staff, from oncology doctors to all levels of nursing staff to a resource specialist and public relations specialist, came out to welcome the JAF team with huge smiles and words of appreciation for the Foundation’s programs. Humbling is the best word I can think of when trying to explain the feeling I felt. When you build a nonprofit, it is not to receive gratitude and praise. It is to alleviate a problem by finding solutions and helping to make someone else’s life better.
I have learned over the years that accepting the gratitude of oncology team members, patients, and their families comes with the responsibility to assure them that we not going anywhere. Too often, we hear about another financial assistance resource whose doors have closed. So, when a BID oncology nurse asked to speak with me to share that JAF is the Foundation she has recommended to hundreds of patients about over the years, knowing that they would receive support within weeks of applying—no words can explain how warm my heart was. In that moment, I am reminded how reliant so many healthcare professionals are upon the Foundation. JAF is having the impact Joe and I intended nearly 16 years ago.
Nothing, absolutely nothing, replaces personal connections and human interactions. I will be talking about our visit at BID for months to come, as they indeed are an outstanding cancer center/hospital that re-energized me to continue serving the oncology community.
The JAF team then headed over to the ACS Hope Lodge, where we set up a UniCORN Resource Directory awareness table that had a fun spin-the-wheel game where people had the chance to win unicorn squishy, chocolate-covered marshmallows, and much more. JAF spoke to patients and family members who reside throughout the country (and the globe) who are in Boston for life-saving cancer treatment. While a handful of families live in one of the six New England states we serve, the greater percentage live in other states.
Here comes the blessing of the launch of JAF’s UniCORN Resource Directory. Cancer patients and families who live outside of our service area (New England) can use the web-based application to filter by cancer type, age, state, and resources to find a nonprofit in their home state with whom they can connect and learn more about that Foundation’s programs.
JAF knows we cannot single-handedly solve the financial toxicity of households in New England through our Assistance and Wellness Grants. What we can do is be a convenor to introduce those needing additional support to other trusted (vetted) nonprofit organizations that are UniCORN members. We can also talk to patients and families about the resources that are available to them, helping them not feel alone. Financial hardship is isolating and experiencing it as a result of a cancer diagnosis, which can be the most challenging time of someone’s life, is simply heartbreaking.
Thank you to all the families who took time out of their Tuesday afternoon to tell us about their personal cancer journey. Being vulnerable to strangers is not an easy thing for anyone. What JAF had the honor of witnessing in those hours was a family who had their loved one with cancer finish treatment the day before, so they were saying goodbye (for now) to another family they had grown close to over the months. The two families shared tears of hope and love, knowing they would not see each other daily but were only a call or message away.
Fun facts: 1) A unicorn is a legendary and mythical creature. 2) A pack of unicorns is called a blessing!
The daily routine as the President of a nonprofit can be incredibly busy. I never lose sight of our mission and the patients we serve (my office is filled with photos and letters from patients!) However, having this time dedicated to meet with patients and healthcare partners recentered me and allowed me to remember ‘our why.’ For me, nothing can replace the one-on-one time with the oncology community who fuels me to continue our work.
Knowing that our work is meaningful and valued, this is the greatest blessing we can receive. If you’ve read this far, thank you. I just had to share this day with our community in hopes that you will be moved to stand alongside Joe and I (and so many others) as we strive to change outcomes for cancer patients in New England.