No Rare Disease Pity Party Here!

My family and friends will tell you that I’m a data dork, learn-a-holic and question queen. I guess that is a compliment? 😉 Since taking the helm at the foundation, I’ve been doing a lot of thinking about whether raising funds for a rare disease is more difficult than a mainstream one. I find it mysterious that total private philanthropy for sarcoma is paltry in the US. Why is that? What’s the downfall of our disease space, and how can we do markedly better? Aren’t there enough donors out there who care about sarcoma sufferers?

Trust me and keep reading, because 30 seconds from now you’ll agree that we can feel encouraged by the whopping success of another rare disease’s playbook…

Sarcoma’s public relations hurdle #1: What the heck is it?

 It is a common nonprofit mantra that the key to raising funds for any cause is rooted in awareness. But what the heck does that truly mean? How does teaching the name of a disease name translate into donations down the line? Does imparting basic facts and statistics move people to open their hearts and their wallets? And, is fundraising success tied to disease incidence?

Just my opinion, but from my vantage point I think sarcoma may have a significant PR problem. Most people have never heard of it, have no clue what parts of the body it strikes, or understand how often it takes lives. Try finding a decent “What is sarcoma?” YouTube video. Maybe 3 in the world? Search Twitter for “#sarcoma” and see how many there are posts with that hashtag. Good luck. You can count on one hand most days.

Sarcoma is diagnosed only about 15,000 times per year. Do you find people have heard of it? Do you think the awareness issue is magnified due to the name of this cancer? After all, sarcoma is not named after a single body part, like breast, lung, colon, prostate, or pancreas. Its name does not give a hint that it is indeed a cancer, nor does the word help anyone visualize a body strike zone.

So have you heard of CF? Know what it is? I made a donation last year to the Cystic Fibrosis Foundation because my friend was fundraising for this cause. I knew that CF was a progressive, deadly genetic disease that causes persistent lung infections and limits the ability to breathe over time. And so, I opted to donate. In other words, I had heard of it and had some basic understanding of it. That certainly weighed into my decision to give the gift towards funding research, without having substantial knowledge of CF or knowing anyone suffering from CF.

I decided to look further out of curiosity, and was stunned to learn that CF is diagnosed only 1,000 times per year in the U.S.! And, only 30,000 are living with CF at any given time. (Under 200,000 diagnoses per year is considered a rare disease.) How did I come to be familiar with the name of this exceedingly rare disease? How did I have any knowledge about it? I have no idea!! Did my familiarity, as weak as it was, impact my desire to donate? Yes, absolutely!

Cause awareness – meaning familiarity of name and a basic definition – really matters in the world of fundraising.

Sarcoma public relations hurdle #2: Not enough awareness events means not enough public exposure

There are only a handful of organizations in the entire country devoted to sarcoma awareness and research, and only a short list of fundraising events. The national sarcoma organization is expanding from 5 walks to 9 this year (plus a few galas and patient education conferences), and was only formed in the year 2000. It is young!

Now look for cystic fibrosis organizations and you get tons, including the main CF Foundation, formed in 1955. So how big is CF Foundation given that the disease strikes only 1,000 times per year? The Foundation’s chapters hosted more than 1,000 events from coast to coast in 2015, netting $91 million. This includes more than 125,000 Great Strides walkers gathering in nearly 500 locations across the United and raising nearly $42 million. Mind officially blown.

I know that CF Foundation has a much longer history, but how has a disease that has an incidence of only 1,000 persons per year become so widely known and supported?? The very abbreviated answer is that they funded research extensively and eventually began their own affiliate to develop and test drugs. Some of these drugs became FDA approved and have extended life considerably for CF sufferers. It is truly an AMAZING nonprofit story which we can all learn from.

So, bottom line?

I think that this huge awareness deficit for sarcoma in the U.S. is costly in terms our collective ability to privately fund research, advance science, and ultimately improve survival rates. So how can we make a difference here in Charlotte, NC over the next few decades? Quite frankly, we’ve got to work hard, dream big and raise our voices. Can we continue to spread the word and become the largest run/walk for sarcoma in the US? Should we take the Sarcoma Stomp to other cities? Can our foundation one day raise millions per year and become one of the largest private funders of sarcoma clinical trials and research in this country? Can we become the gold standard? Can we become the role model?

Yes we can.

I want to read this blog post at my retirement gathering (lol) many years from now and hear the crowd audibly cheer as we celebrate our reach, our many milestones and the many curative treatments for sarcomas we have funded. Until then, we should not hide behind a rare disease pity party as a reason for not being able to raise substantial monies for research funding. Victim mentality always backfires. Let’s be more like Cystic Fibrosis in the decades to come. Think big, act big, be big!

So, tap the keys NOW to register for the April 29 Sarcoma Stomp, and let’s get that non pity party started…

Ground zero, but my way…

It was June 2009, and a big day for me. I had just returned from the car dealer, having closed one of life’s chapters by trading in my ancient mommy van for a gently-used, lightning-fast sedan. I stared in glee at my sparkly red machine, reveling in my happiness over finally graduating from those clunky, manual sliding doors. Oh, and not to mention the absence of that huge DVD player and TV combo that we strapped down with bungie cords to the captain’s chair anchors for road trips with the kids — which rested atop the chewy snacks and dog fur that were forever glued to the chair tracks. It was a new dawn for me in this next phase of life, behind the wheel of a car that was not filled with lunch remnants, dented from new teen drivers or required extensive wiring to play something more than a cassette. I had arrived, I thought.

Until the phone rang and I heard the word “sarcoma” being uttered by my brother for the very first time…

Since that day I’ve learned, through my brother’s fight against sarcoma, what it means – in harshly realistic terms –  to not only be stricken with a cancer diagnosis, but to be victimized by one that had so few treatment options. I saw firsthand, at every post-scan appointment, his gut-wrenching cries from the devastation of knowing that the cancer was growing wildly. I saw the eyes of a man, who once had a smile that lit up every room, be reduced to reflective pools of a crossroad between immense courage and haunting fear. I was constantly gripped with terror in the race against time in finding the answers he needed to regain his health. And ultimately, I watched in complete horror as his children wept and placed some of their beloved toys and blankets upon his slowly-rising chest.

It is through the witnessing of this unspeakable suffering of Alan, and then Paula Takacs, and learning about the harsh realities of this unrelenting villain, that drove my decision to take the helm of the Paula Takacs Foundation. So many people over the last two years have asked me to blog about my experiences as an advocate, caretaker, sister, and friend, so that our supporters will get to know me better. To be frank, I’ve been relentlessly conflicted about it. On one hand, it would give an “insider’s view” of this disease for those who have not been sadly acquainted, so that they would clearly understand and appreciate the dire need for research and treatment options. However, I think about the many, many families that are part of our foundation family now, and how my no-holes-barred recounting of hell would upset them and bring back their own demons. And so, regardless of the catharsis it might afford me or the popularity I might gain in the world of cancer blogging, I simply cannot do it. Some may say I am wrong, but I’m at peace with it.

I will, however, write from time to time about the special moments and hilarious predicaments that I will always treasure in the year I spent with my brother Alan. Those are the stories he’d want me to tell you – the one’s that brought tears of unbridled joy or the ones that caused that kind of laughter when your sides ache. That’s what he’d want. And that’s what Paula would want.

How do I prefer you to get to know me? Let’s have coffee together. Come to a volunteer meeting and chat. Introduce yourself at the April 29 Sarcoma Stomp.  And yes, I’ll be there with my now elderly red sedan – scratched, dented, and worn – but driven with mind-bending perspective.

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.

Why She Volunteers

Volunteer Camine Pappas has donated countless hours to the Paula Takacs Foundation. She serves on our Marketing Committee, helping to craft the messages of hope and impact that reflect our mission. Camine designed our website as well as every digital and print marketing piece for the annual Sarcoma Stomp. We are forever grateful for her dedicated and passionate volunteerism to help our nonprofit grow to the next level. Listen to Camine as she explains why she believes in the Foundation and its future.

We hope that you’ll join also us as a volunteer by clicking here. As volunteers continue to join in, we will be able to hold more fundraising events– accomplishing more and more on behalf of sarcoma sufferers!




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