Striking a Match: Pairing Patients with Survivor Mentors

Patients can learn a lot on their own about how to navigate the cancer experience, but sometimes the encouragement of someone who’s been there can make the worst moments more manageable.

That’s the concept behind Imerman Angels, a Chicago-based nonprofit organization that carefully matches patients with people who’ve survived similar cancers and can offer specific help and guidance. The group also matches caregivers with those who have filled that role in the past. The service is free.

Founder Jonny Imerman, a cancer survivor himself, visited CURE^® recently to discuss Imerman Angels and his newest venture, Cloztalk, a company that designs and sells branded apparel on behalf of charitable organizations to raise awareness and funds.

^{JONNY IMERMAN describes himself as a socialpreneur.}

CURE®: How did you find out you had testicular cancer, and how was it treated?

Imerman: I was 26, and like a lot of young men, I thought I was invincible and didn’t go to a doctor for five years. I was in a bar shooting pool, and all of a sudden it felt like someone literally took a knife and violently stabbed me in the left testicle. It was the worst pain of my life. I waddled to the car and got in, only to realize that I couldn’t reach the pedals because my legs were cramped up. I finally got my legs down enough to drive the car — I could barely see — and not long after, a doctor sat down with me and ran his hands through his hair and crossed his legs and said, “Listen, kid, I’m sorry; you’re in your 20s and I don’t want to tell you this, but you have advanced cancer.”

It turned out it was testicular cancer that spread from the left testicle all through the lymph nodes and into the pelvis, abdomen, behind the kidneys and almost to my lungs. I immediately went into surgery to cut out the testicle, and then I went into chemotherapy for five to six months. I banked my sperm before that, because a lot of us with this disease are going to be sterile.

How is your health now?

I had initial surgery, then five or six months of chemo­therapy, and then everything looked clear for about a year. About three or four quarterly CAT scan checkups later, they found four tumors behind my kidneys. We went right into surgery and did an 11-inch vertical incision pretty much from the sternum bone down to the pubic bone. I woke up with a tube in my nose and looked down and it was like a zipper — just big, industrial metal staples, about 60 up and down. It turned out that the tumors were benign teratomas, not cancer. After that, all my checkups have been clear since 2002 or 2003. I get checked up on a regular basis, like every survivor should. That’s how we’re going to make sure that we stay clean and healthy.

What motivated you to start Imerman Angels?

A group of young survivors and I met in metro Detroit at Karmanos Cancer Institute. We felt isolated when we were done with treatment. We wanted to give back, so we said, “Why don’t we go back to our small, local cancer center and go door to door to all the patient rooms?” They needed company, support, knowledge and friendship.

But then we looked at it and said, “You know what? I’m a guy and this patient is a woman. She had ovarian cancer and I had testicular. She’s in her 70s and I’m in my 20s. A better fit is if we find a survivor who’s more like her.” That’s how we figured out that we should match people who are similar. Imerman Angels aims to build that bridge so that somebody in Jersey who’s fighting a rare form of leukemia while in college meets somebody in Tucson who says, “When I was in college five years ago, I was also the cancer girl. I know what that’s like.” You put those two people in the same room virtually or physically and it’s a tremendous bond, an instant connection.

How has Imerman Angels evolved since then?

Now we help people across 93 countries and in all 50 states in the U.S. Two out of three of our matches pair patients who have any stage of disease with survivors of similar cancers, and the rest bring caregivers together. We have a call center and use a database to manage a 10,000-plus group of registered, trained volunteer mentors. If anyone comes in or calls in and says, “I’m really alone, and I’d love to meet a survivor like me,” we have conversations with them. Then we look in our network and read the notes, run reports, cross-section the data and find who’d be the best match.

How do you find mentors?

We use the same three channels that we rely on to find the people who are seeking support. The first one is hospitals — doctors, nurses and social workers. We spend a lot of time getting to know them, and we tell them our service is free; they can give patients our website address and we’ll do everything from there. The second way is through partners — groups like CancerCare, Livestrong, Komen and the American Cancer Society. We cross-refer patients all the time. The third channel is the hustle. T-shirts, logo branding, hats, water bottles with Imerman Angels on them, media, social media and all the in-betweens: It’s just telling everyone you can that this thing is here, it’s free, and if you know anyone touched by cancer, they should be aware.

What kind of feedback have you received?

People are not shy to tell you how much it helps them or how it’s changed their mindset. It’s one of the things that really fuel our team. People will call after speaking to their mentor for the first time, shocked at how much they have in common and feeling a renewed belief that they can get through their cancer. They ask how we could have found this amazing stranger who just cares about them. This might literally save a life; we’ve had cases where somebody wouldn’t even go to treatment until they talked to someone else who did it and beat it and saw that there was some hope.

How is Imerman Angels funded?

The budget is around $1.8 million a year for our eight-person organization. Most of our funding comes from the Chicago Marathon. We have 212 runners who raised around $400,000 last year. We started out with Imerman Angels being very event-driven. We were all young, so we started throwing bar parties for $10 to $15 per person. We still do some parties like that, but now we have a black-tie dinner, too. We get some of our funding from grants, and we have a lot of corporate sponsors, too, including Walgreens, Equinox gym and Plum Market.

You recently launched another startup, Cloztalk. What is its mission?

Our model is based on what we learned from Imerman Angels. We had messed up our fundraising T-shirts so many times that we finally figured out a model that worked, and people started buying our shirts and hats and track jackets and wearing them in downtown Chicago. We made higher-quality stuff that was simple — black and white, a little cleaner, a little hipper — and the young professionals started wearing it. That helped us brand and grow and raise awareness and helped our impact.

We realized we could do that for other charities, but we wanted to make it free and didn’t want it to take time or energy for them. Charities basically apply to us, like a grant, and if we think they’re awesome and their brand is worthwhile, we take their logos, build out their online web stores, design apparel for them, and sell it on the world’s largest online apparel store for charity logos that matter. Anyone can come to the site, click on different causes, read about their missions, watch a video, get inspired, care, and hopefully rock that message by buying some apparel.

We believe that awareness drives everything that charities need. It’s more important than funding, because awareness can bring you not only funding but also supporters and even future board members.

We do everything full-service, and then the clothing is made on demand when someone orders it online. We ship the apparel so the charity never has to touch it. At the end of the year, we donate 20 percent of our net profit back to the causes, so this also can be a great fundraiser for them. Each charity gets 20 percent of the sales made on its behalf.

We already have more than 95 charities participating. They represent everything from helping animals (Lulu’s Locker Rescue) and training therapy dogs (Soul Harbor Ranch) to supporting patients with cancer (Hope for Stomach Cancer) to ending homelessness (La Casa Norte) to protecting human rights (Center on Wrongful Convictions at Northwestern University) to helping chil­dren in need (Erika’s Lighthouse, which raises awareness about adolescent depression). Everything is U.S.-based, and we only partner with causes when we think the world will be better if they’re bigger and stronger.