Rockin’ Wendie and Rainbow Wigs

I’ve wondered for a number of years now who Rockin’ Wendie was and I always admired Team Rockin’ Wendie’s Warriors at the annual Sarcoma Stomp. Tonight I finally found out in an email from Wendie’s sister and it felt SO good. Why? Because she didn’t just explain why this team shows up at the Stomp each year donning rainbow wigs, smiling brightly, and lighting up the course with their smiles. Heather told me the story of a woman so beloved, not only by her family and friends, but also by thousands of elementary school students learning the value of character traits through her music and dance.

“We are looking forward to coming to the Sarcoma Stomp once again this year,” says Wendie’s sister Heather Mitsopoulos. “We will be there with our wigs in tow!  I don’t know if I’ve ever mentioned why we dress up the way we do, but my sister who had Sarcoma, Wendie, used to film these character trait videos that would get played in local elementary schools in Macon, GA where she lived.  She played a character called Rockin Wendie and her co-star was Poppin Pj (a close family friend who wore a mohawk during the videos).  Chick Fil-a was working on a contract with my sister to use the videos in their marketing materials, but unfortunately my sister got too sick to continue filming.  The elementary age kids that the videos went to never knew she was sick or didn’t have any hair because she wore her wig.  🙂  So, we honor her memory by dressing up as Rockin Wendie and Poppin PJ!  She joined us for 1 of the Sarcoma Stomps a few years ago and got to speak with Paula…shortly after that Sarcoma Stomp both Paula and my sister passed away.  The Sarcoma Stomp falls usually within a few days of my sister’s b-day, so it’s a celebration of her b-day for us!”

Thank you for writing about your awesome sister, Heather! There is no doubt that the stories behind the mission gives this foundation texture and soul. And Wendie sure did have soul! :-)))

Click this link to watch a Rockin’ Wendie and Poppin PJ video: https://www.youtube.com/watch?v=f120n1K2CfU

Click to see a news story about Rockin’ Wendie and Poppin PJ: https://youtu.be/hOHL-C5eKe0

If you’d like to join the Rockin’ Wendie’s Warriors team, either in-person or as a Virtual Stomper, click HERE.

If you’d like to donate to the Rockin’ Wendie’s Warriors team, click HERE.

Defining “Cured” from the Sarcoma Trenches

By guest blogger and sarcoma survivor, Julia McGrath

It didn’t take me long after being diagnosed with sarcoma to come to the conclusion that cancer terminology can be really confusing. But here’s how I choose to see it…

Most folks gather with their friends at the local coffee joint to have light conversation, but when I see my fellow cancer survivors we might discuss things like the terms “cancer-free”, “in remission”, and “cured”. Through our conversations, it was apparent that the survivor, the oncologist, friends and family use the terms differently and at different times.  Doctors treating sarcoma patients tend to celebrate NED (no evidence of disease), sight the statistics, and say that a patient is “in remission” because sarcoma cancer does often come back. Friends and family might say that once a removal surgery takes place or chemotherapy is finished that the cancer is gone, and feel that it is gone forever. But as one of those patients I debate in my own head about when a sarcoma patient is considered “cured”, because that’s the elusive term in sarcoma we’d all covet to use. I have tended to stay somewhere in the middle thus far in my journey — I know the cancer can return, but I focus on the positive. So in that middle space, should I tell everyone I am “cancer-free”? How do all these terms feel to those of us who have been diagnosed, whether in or out of treatment? How does that play into our emotional state and stress levels?

According to scientific data and terminology, I am in complete remission because no new cancer has been detected since its removal in October, 2015. Am I “cancer-free”? And when am I “cured”? CT scans cannot detect small cells. And I know that statistically, my sarcoma -if it is going to return- will most likely come back in 2-3 years. But from what starting point? Is it 2-3 years from the surgery, when it was removed, or is it 2-3 years from when I ended treatment (in my case, chemotherapy), about 6 months after the surgery and clear scan? Confused yet? I know many of us are.

After all, my oncologist gave me the option of doing one round of treatments (six cycles, each lasting 21 days). I could have opted out. But I asked myself–what if there were loose cancer cells floating around in my body that the scan had missed? How could I be sure I was truly “cancer-free” without a little chemo? Should I less confidently say I am “in remission” and then wait and see?  

Now I visit the radiologist every six months for a scan to see if any cancer large enough to see has returned. I anxiously await the call from my doctor saying that everything looks good. I know I will feel much relief when I can theoretically ring the bell and announce that I am FIVE years clear. Five years in the world of cancer generally means you are “cured”, though there are never any guarantees – especially with sarcoma.  

Until then, I take one day at a time and look forward to the future as “chunks” of time. I will say I am doing well — I exercise, plan family activities and attempt not to think about it. I try not to focus on how I define my cancer state, or dwell in the anxiety that walks next to me 24/7 in the reality of these terms and statistics. Every day that I wake up and believe that I am “cancer-free” is a day I am very thankful.

Please join me in celebrating sarcoma survivorship, however you personally define it, by registering for the April 29th Sarcoma Stomp!!! Click here to register for my team, Julia’s Jamboree, whether participating in-person or as a Virtual Stomper. Or, click here for more information.

With love and hope,

Julia

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

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