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… www.sarcomastomp.org

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.

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