Our Supporters Don’t Need the Nickel!

During a recent trip to my mailbox, I retrieved a donation solicitation that yielded a familiar sight; one that I must admit, kinda irritates me. In the window of the envelope, near the familiar stream of return address labels, a shiny new nickel is on display for the taking. What kind of message is this sending to us? That 5 cents can change a person’s life? Or is it subliminally reinforcing what I see as a concerning and rising industry trend that we will give you a gift if you donate to our cause?

Okay, I’ve said it. Before you go all postal on me, please, hear me out.

It has been a little over two years since I took the helm of the Paula Takacs Foundation for Sarcoma Research. My background in the stock market and securities regulation is apples-and-oranges compared to the non-profit world, and boy have I learned a lot in the last 26 months. I’ve met many peers and have attended many events. I’ve watched, I’ve analyzed, and I’ve ingested a ton. To say that I am in awe of the endless stream of critical missions and passionate nonprofit leaders in a challenging landscape is an understatement. But inherent in the industry competition and the changing demographics of the donating public comes what I believe to be an unfortunate rising trend – the increased expenses of fundraising events related to giving  party swag, participation gifts, and the like. Yes, sometimes these things are donated by corporate sponsors, but oftentimes they are absorbed by the nonprofits themselves. And that lessens the impact they can make.

 So why are our supporters different? Why do they “get it”?

For every fundraiser we execute, whether it is the annual signature Sarcoma Stomp, or other smaller events held throughout the year, our Board pours over the numbers and makes conscious decisions about where we will allocate our expense budget to attract participants to our event and to ensure that the event is fun, engaging, and of quality. We make the tough choice not to give gifts for showing up, because we firmly believe that those who understand the huge significance of this mission will attend — and because they want to fund as much new research as possible. Are we taking a competitive risk? Yes. Can we sleep at night? Yes, because we feel most authentic and correct in this approach.

I have gotten to know many of our supporters, some of whom hail from sarcoma families and some who are just plain kind. Perhaps I’m a bit partial, but I think that we have the most loyal and heart-forward supporters around. Each year they donate, participate, and volunteer with vigor. They tell us that they had a blast at our events, and they send soulful emails and notes of gratitude for the work that we do. They get it. They feel connected to the cause, the effort we put forth, and the immense value of the sarcoma research program at Levine Cancer Institute.

So what is our philosophy of supporter connectivity and appreciation?

I would like to think that our connectivity lies in several factors, but all of them take root in authenticity and communication. We love getting to know our families – the stories of how they came to know us, the stories of how cancer has impacted their own life, the journeys of survival against the odds, and the heartbreaking retelling of loss. It is that candor and openness between us that is beautifully real. It is the complexity and the struggle of the human health experience in the cancer world that binds us in this mission.

Our supporters also understand how they directly impact the mission and how their generosity is put to work. They read the updates we send in emails and post to our website, they stay in touch on Facebook and Twitter, and they call me to ask questions. They truly believe that the research they are funding at Levine Cancer Institute is important, valuable, and novel. They are keenly aware that efforts to advance the field of cancer research requires significant funding and long-term commitment. They give generously even though they see that the impact on our community and the world-at-large is a lengthy process. They are committed. They get it.

We thank our supporters for their generosity, their embrace, and their understanding of us. Thank you for not making us feel badly that we don’t send you nickels in the mail to entice donations and that we don’t give you expensive swag for showing up at fundraisers. Instead, we show our gratitude in smiles, hugs, handwritten notes, and phone calls. We show our gratitude in the telling of the progress of the growing research program at Levine Cancer Institute. As things continue to advance at Levine, we believe you’ll be hearing from patients who’s lives have been improved by your tireless dedication. These are not expenses you’ll see on our balance sheet. This is how we choose to do business.

We look forward to a wonderful time with you all at the April 29 Sarcoma Stomp. They’ll be lots of smiles, hugs, and expressions of gratitude for all. Come introduce yourself if you are new to the Foundation family. Come ask questions about the progress. Yes, these things will be in our budget under “intangibles.” Nope, they’ll be no nickels in view.

Life Awaits!

I get emotional – but in a good way – every time I meet someone in our sarcoma community. It’s a huge honor to meet a cancer survivor and hear their story, because I never forget that it is a very painful topic that invokes every emotion under the sun. I feel like I am treading on sacred ground in these moments. And that’s where I treaded last week.

Excitedly, I walked into the coffee shop to meet Sarcoma Stomp participant, Leah Kirby, for the first time. I was greeted by a tall, beautiful, glowing young woman. “How could she have been diagnosed with that devil?” was my first thought as I laid my eyes upon her. But my head told me that I knew better than to dwell in that mystery, since the horrid fact is that 40% of bone sarcoma sufferers are under age 35.

Leah told me that she was diagnosed with osteosarcoma on her right fibula at age 31. It all started with leg swelling, but she didn’t think much of it since she is a nurse practitioner at CMC Pineville — putting in many steps each day. A lump then appeared, but still no pain. That lump on her leg was watched for 4 or 6 months, as she remained pain-free but perplexed. Doctors decided to do an MRI in April of 2015, at which time the osteosarcoma was found. Leah had 2 cycles of chemotherapy before surgery and 4 cycles afterwards. Dr. Joshua Patt of Levine Cancer Institute removed a 11 ½ x 6 cm tumor from her leg, along with some muscle and nerves, miraculously achieving negative margins. For that surgical outcome, and for the fact that the disease had not metastasized to her lungs, Leah was so grateful.

Leah then paused our conversation and pulled out her phone, showing me – without any hesitation – a photo of that swollen leg. It sure didn’t look like the devil had taken up camp in there. But then I saw the photo of her extracted tumor; it was ghastly. It made my heart hurt.

“What things about being a young adult diagnosed with a sarcoma did you want your peers to understand?” I asked her. Here is what she told me:

  • Please listen to your body! I had swelling and a lump in my leg, but no pain. As an NP on my feet all day, it didn’t seem very troubling at first. But then it was. No pain does not mean no problem exists. Pay attention people!
  • Some people don’t understand that a cancer diagnosis is a marathon and not a sprint. They don’t understand “NED” (no evidence of disease), thinking that it means cancer-free. They ask me how long I must wait until I’m considered cured. The statistical fact is that I have a 45% chance of surviving 5 years. I just choose not to dwell on it or make it the epicenter of my world.
  • Cancer is a life-changing diagnosis. For me it meant several huge decisions, like whether to delay starting chemotherapy to harvest some of my eggs or begin immediately and risk infertility. I tried so hard to stay true to myself to cope with 9 months of treatment. But it is hard because everything changes.

She went through these difficult topics with grace, candor, and wisdom way beyond her years. It was very clear that Leah had refused to let her osteosarcoma diagnosis define who she is or what life holds for her. In fact, she told me that she will be moving back to her home state of Illinois to be with her family and her boyfriend…and to write the next pages of her life’s story. She will travel before starting her new job. She is very happy. And it showed.

Leah let me know that she won’t be able to participate in the Sarcoma Stomp this year, since she’ll already be back in IL then. She is hoping, however, that some of her Charlotte buddies will continue to participate in honor of their friendship — and to raise money for sarcoma research at Levine Cancer Institute.

As we finished up and said our goodbyes, Leah took me over by the exit to meet her sweet mother. “Well, life awaits!” she exclaimed with eyes sparkling, as she took her mother’s hand, looked back at me, and strode confidently out the door.

The Paula Takacs Foundation for Sarcoma Research | Charlotte, NC 28271 | (704) 516-5113