Announcing MAC's new blog.! Over the coming months, we plan to feature both personal reflections and informative articles submitted by our members. In our first post, one of our members recalls her first MAC meeting and all that has happened since..
My daughter Rebecca was not a big fan of groups. Although she did meet and share experiences with others in waiting rooms and hospitals throughout the course of the clinical trials in which she participated, she did not seek out support groups or online communities during the seven years she lived with melanoma. We who were caring for her followed her lead. We were like travelers doing our best to navigate strange and treacherous territory without the benefit of the experience of anyone who had gone before.
After we lost Rebecca and decided to establish a foundation in her memory, we continued to go it alone. We stumbled through everything from incorporating and applying for 501(c)(3) status to planning our first fundraisers and deciding how to spend the money we raised, without ever thinking that we might benefit from talking to others who had done this all before. After about two years of our Lone Ranger existence, it occurred to me that it might be useful to find and connect to other melanoma organizations. I contacted the Melanoma Research Alliance and had the good fortune to speak with Jennifer Engel, who was then MRA's Development Manager for Foundations. She promptly added our foundation to MRA's mailing list and gave me names of a few other foundations working in my local area. I was happy to have this bit of connection but did not reach out any further after that, continuing to steer my foundation along its lonely path.
A few months later, I brought in the mail and found an interesting letter. It was from Neil Spiegler, who ran the Peggy Spiegler Melanoma Research Foundation in New Jersey, and it invited members of foundations throughout the mid-Atlantic region to attend a meeting in Cherry Hill, NJ that fall. I was excited beyond belief at the invitation. I would actually get to meet some other people doing what I was trying to do, share ideas, maybe get some advice. I promptly accepted the invitation and eagerly awaited the meeting date.
On November 1, 2014, I drove the two hours from Baltimore to Cherry Hill through pouring rain. When I arrived I couldn't find the address I was given. After driving in circles quite a few times, I finally located the meeting place and ran from the parking lot through sheets of rain to arrive soaked and disheveled just as the meeting was about to begin. The greeting I received was as warm and welcoming as the outside was cold and nasty. There were 10 of us, representing seven organizations, gathered around the table. We introduced ourselves informally before we began and then told our stories more fully as we sat down together. The stories we told were not just about fundraisers and awareness activities but about why we were doing what we were doing. They were stories of those we had lost and stories of those who were still fighting this disease—and as I told Rebecca's story, I felt that for the first time in many years I was talking to people who got it, who understood, just as I understood their stories,
We talked together, cried together, worked and planned together that day, and left knowing that we had already formed strong bonds. In subsequent months, we began the work of building a formal coalition. We are now 20 organizations strong and growing. Our membership reaches from coast to coast. We share ideas and resources, turn to each other for advice, support one another, and bring our voices together to advocate for such public policy initiatives as restrictions on the use of tanning beds. But at the heart of what connects us is still a shared commitment to defeating melanoma rooted in deep personal experience.
In February, we held our first annual meeting in Washington, DC. Many of us gathered for dinner afterwards. As drinks were served, one of our members asked for our attention. Raising his glass, he made a toast “to all those who aren’t with us tonight.” No other words were necessary. Raising our glasses, we looked around the table, meeting the eyes of those who knew our stories, those who understood our pain, and those who shared our determination to work together toward the day when no one has to sit round a table remembering a loved one lost to this dreadful disease.
Christine is president of The White Aisle Foundation and a MAC Steering committee member.