FOUNDATION FACTS
- Side-Out Foundation founded in 2004
- Rick Dunetz, executive director
- Have raised nearly $12 million for Stage IV Breast Cancer Research ($1.1 million in 2016)
- Currently treating 100 patients and in phase 3 of 4 clinical trials
- 765 participating high school, college, and club teams in 2016
During October Breast Cancer Awareness Month, VolleyMob was able to catch up with Rick Dunetz, executive director of The Side-Out Foundation, which raises money for Stage IV Metastatic Breast Cancer Research.
Unlike many organizations which grant the funds they raise to outside organizations to manage the research, Side-Out owns, manages and operates the clinical research themselves with their own research protocol. The research is funded throughout its lifetime, including through a series of clinical trials, by the Side-Out Foundation.
Currently, Side-Out is recruiting for the third of four planned clinical trials, with some patients already in the study and more being added all the time. The protocol involves precise, personalized medicine so every patient gets a different treatment mix according to that person’s own bio markers. Theoretically, this unique approach allows for the exact treatment that will work best for each person. Since this work is the foundation’s most important goal, fundraising becomes a means to the end of finding out how to make metastatic breast cancer a manageable disease.
VM: Is there anything about the early years of Side-Out that is not as well known?
RD: We actually got started because of something miraculous, amazing, positive and wonderful. Side-Out wasn’t started because my mother had breast cancer. It was started because I thought these kids had the power to inspire people. And if we could capture that in a bottle, maybe these kids can get movement in an area, in a part of a disease that is the most underfunded and unrecognized part of the disease and actually make change in the world.
VM: What are the specifics about how Side-Out got started?
RD: In 2004, I got an opportunity to be the head coach of a struggling program whose previous coach left in the middle of the season so I was working with this distraught team. At the same time, I found out my mother had stage IV breast cancer. Inexplicably, these two entities that were struggling happened at the same time and I had to feel my way through the entire experience, which was really challenging. I was a new coach who really didn’t understand much about running the volleyball program and I sort of opened up to the team. I talked to them and told them I’m dealing with a lot of stuff and this is really hard. I need your support, not only helping me become a better coach but also understanding the situation I’m dealing with with my family.
VM: How did the team respond?
RD: The team sort of rallied around that idea and decided they were going to not only support me and my coaching but also that they were inspired by my mother fighting this disease. So this team that was struggling started to win and they ended up winning the district championship against the team they had no business beating, it was sort of a miraculous season. That season was the catalyst for this idea that these student-athletes could have an impact. So that was an opportunity in 2004 for my team to do something miraculous and every single one of them did. I had some players who like me really well and I had some that didn’t but they all stepped up it was really amazing.
VM: Can you highlight some of the early successes?
RD: We did some pretty miraculous things in our early years in 2005. When we first started Side-Out we were hosting a grass doubles tournament. The first year we had 100 teams. It was the only thing in town, it was the only thing you could do. In the first year of our event, we raised $8,000, which I thought was pretty amazing for our first-year hosting the tournament. And every year after we got better and better. In 2007, where we had started as a $8,000 doubles tournament, we had turned it into a $16,000.
VM: Did you have any early struggles?
RD: In our first year of the grass doubles tournament, we were calling around trying to find different charities to support. We started calling the national charities but we wanted it to specifically be for Stage IV because it was least recognized and most underfunded. We called the different charities and they shot us down immediately. They said we can’t do that and volleyball isn’t a good way to raise money. They said we weren’t going to have much success with it. So for that year, since it was a local tournament, I called our local Cancer Center – Inova Healthcare System and said I want these funds to go to Stage IV research and they said okay.
VM: What motivated you to create the Dig Pink event?
RD: The problem was that we weren’t going to make a huge impact raising $16,000 a year, that’s sort of the sad truth about raising money for research. To give you an idea so you can understand expenditures it cost between $30,000-$60,000 a patient. And that is just the level of care per patient to run a clinical trial. So that was a challenge. So I decided I would have to find a better way to raise dollars. I have to find a better way to get our community motivated. I didn’t have a staff, it was just me and my dad. I didn’t work out of an office, I worked out of my house. We didn’t have a name for the event and we didn’t know what it was going to be. We decided to email all the volleyball coaches in the U.S. We just said we want to do something in the area of raising funds for research and stage IV would you be interested. Literally, the email read something like that. And the next day after sending about 22,000 emails we got about 1,600 responses saying that we want to do something.
VM: How would you describe Side-Out?
RD: We are not a conventional non-profit foundation. There’s nothing wrong with being conventional, but we want to be something a little different. Our goal now is to solve a problem. Not to solve every problem. We’re not trying to support everybody but to solve a problem. Let’s find something that actually will impact people. We want to make sure what we’re funding is going to have an impact. And we want our sport to be the reason it happens. Whatever people want to do for this cause is important. Those who do work with us should understand whatever they do to support us and share our mission is going to bring light to this part of the disease that’s underfunded and will shine a light on this problem. It will be funding something that will impact people in a positive way.
VM: What gets you excited about the work you are doing?
RD: That’s what’s really cool about our clinical research is that it helps real people and in over 50% of the people it actually slows or stops the progression of the disease, which is all these people need. They want a glimmer, they want to understand that they’re going to be okay. So, in terms of excitement, we are taking it to a whole new level. In the phase 3 study, we have 100 patients. I don’t know if people look at that and see 100 patients that doesn’t seem like a lot of patients. But the hardest part about clinical research is getting patients.
VM: How much influence do you think volleyball has on this non-profit?
RD: The goal, in the end, is to say volleyball did this. That’s what makes things really exciting for everyone. We are a sport that is raising funds at the same level as some of the major sporting leagues, professional sporting leagues. We are doing every bit as well as them but we are doing it in our grassroots community. To be able to say that we are changing the way that breast cancer is treated, that’s pretty cool.
VM: Do you have any current projects you are working on?
RD: We are creating a display that honors the 150,000 people who are living with stage IV breast cancer today.I don’t know how I came about it but I thought about doing origami cranes. Our community here is creating a massive display of 150,000 origami crane to honor the Stage IV Breast Cancer patients living with the disease right now. It won’t be done in October but when we get it done, it will look pretty phenomenal. We are going to be working with AAU Nationals to see if we can actually do this in the 12 days at nationals. I think it’s possible, it would take every player and some of the parents to do 3-5 cranes to be able to build it. We would build it right there on the floor. Now we just have to work with AAU Nationals to see if they want to take on this and recreate the project in 12 days. Which would be pretty amazing.
VM: Where do you see Side-Out in 5 years or further down the road?
RD: We want to be a three to five million dollar charity. We don’t want to be a massive charity. We want to keep our research and science moving forward for those 40,000 men and women each year that are losing their lives to breast cancer, which a majority of those are metastatic stage IV breast cancer. We want to be the beacon of hope for that. We want to keep pushing forward with that science. If for some reason breast cancer is cured or we have a way to hold the cancer at bay, to make cancer a chronic disease, which would be phenomenal in 5 years. Then I would say I would turn Side-Out into a cause organization and we have the same model and pick something that the community could own. Maybe three to five different causes that any school could participate in. It would allow these kids to make an impact in the world, but do it in a way so their effort is actually having an impact. Raising money makes people feel good, but the amount of money people raise does not equate to impact. The impact is how the dollars are spent.
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