Why I Do What I Do: Spotlight on Michael Levine, NephCure Vice President

NKI: How did you first find out about NephCure? How did you get involved?

Michael Levine: I think my wife Dana found NephCure on the internet. That was 12 and half years ago, when my son Matthew was first diagnosed with FSGS. I think it was a few months after the diagnosis that we got connected.

The first event we got involved with was probably the Countdown to a Cure gala, with Ron Cohen and everybody from New York.

NKI: You’ve been involved both directly as a chair for so many of our events, like Countdown to a Cure New York and All In For a Cure on Long Island. What’s been your favorite NephCure event?

Michael: Well, each one is different. Quite frankly I love them all, because they all serve a purpose: to create awareness all over the country and the world, and to bring exposure to NephCure, FSGS and Nephrotic Syndrome. And obviously, the events raise dollars to try and create this miracle of a cure.

I guess my favorite event is Countdown to a Cure, because NephCure gets to put its best foot forward to so many people. Over 500 people attend, we raise over $600,000, and it’s just a very classy, professional event that is seen by so many families and patients around the country. It gives these patients and families hope. Seeing what NephCure does with that dinner, and meeting families from all over the world, it gives everybody so much hope that if we could do more events like that, a miracle of a cure is attainable.

NKI: You have raised an incredible amount of money in the 12 years that you have been volunteering with NephCure, on the NephCure board, and chairing for so many events. Does asking for money get any easier with experience?

Michael: It never does. The only thing that gets any easier is the knowledge of what we’re doing. Talking about what NephCure does and what our goals and dreams are, that gets easier because I talk about it so much. And telling my story gets easier only because it’s so engrained and enveloped in me.

But for me, asking for money is not something that gets any easier. It’s very hard for me to do because I’ve never been a person who is big on asking for help. Many of the fundraising experts say that it should get easier, because you’re asking for money for a very good reason: you’re asking for money to fund a cure and save lives. But for myself personally, it never gets easier.

NKI: Is there anything that you think to yourself just before you initiate that first conversation that helps you get past that feeling that it’s going to be tough to ask for money?

Michael: Well every time I ask, I say to myself, “Think about all the warriors around the country and around the world battling FSGS and Nephrotic Syndrome.” All the people who reach out to me on Facebook with their families’ and children’s stories. All of the Humans of NephCure stories on Facebook, which I read every single week.

You know, sometimes it’s not easy. Sometimes it’s overwhelming. And there are some days that I say, I can’t do this anymore. But then I think about all the families and children that are battling this horrible disease, and I don’t want them to go through the same living hell that my family has gone through over the past 12 years. So that’s my motivation.

There are two phrases that I always carry around when I do this. First of all, when I find out that somebody has made a donation to NephCure for an event that I’m a part of, I always write back to them, “You’re an angel on our shoulders. You allow us to dream that a miracle of a cure is possible. You give us hope against the greatest odds, and you give us the strength to fight every day.” I write that to everybody.

I also often write to people, “We are delivering dreams, miracles, wishes, and cures to the warriors around the world battling two devastating kidney diseases, FSGS and Nephrotic Syndrome. These diseases have no cure, and destroy kidneys, families, and lives in their path.”

Whenever I think of those things—that’s what motivates me to tell my story to ten people a day, and to ask people for help and to donate money, and to ask people to attend all these events around the country.

NKI: What kind of advice would you give someone who wanted to do a big event, like a gala, for NephCure?

Michael: The first year is the toughest. You just have to get through that. After the first year, when people see how heartfelt you are and see that you’re trying to deliver dreams, miracles, wishes, and cures, it will get easier.

NephCure, FSGS and Nephrotic Syndrome need a ton of awareness and exposure and a ton of dollars. So grab some friends, family and business associates, and say, “I want to save some lives today. I want to create a miracle of a cure for the children and adults battling FSGS and Nephrotic Syndrome.”

Whether it’s a bowling tournament, a sporting event, a golf outing, a lemonade stand, a gala, a dinner, just grab some people, form a committee, start having some meetings, and have that committee invite their friends, family, and business associates to the event. It’s like a mushroom, or a plant—it will grow. After you get through the first year, everyone who attends in year one will invite more people for year two, and it just expands. If you want to create a miracle of a cure for FSGS and Nephrotic Syndrome, just create an event. You can do it anywhere in the world.

You might not raise that much money, awareness, or exposure in year one. But it’s the stepping stone to years 2, 3, 4, and 5. And maybe by year 4, 5, or 6 you could be like the Tampa Pig Jig, where they’re raising $800,000 and have 6,000 people attending their event. You can’t get discouraged; you just have to fight through it. Just get started. I think that’s the best advice I can give.

NKI: You make something that might seem complex to someone who has never done it before seem very attainable and possible.

Michael: It’s very possible. You could start an event anywhere, and every dollar you raise brings us one dollar closer to a cure. You’ll get so much out of it, knowing that, and all of your friends and your family can be involved in it with you. And when the event is over each year, the fulfillment of saving lives by doing an event is incredible.

I would just like to add that NephCure has been a godsend to my family. With all the events that NephCure puts on—the Nephrotic Syndrome Symposia, the conference in Chicago, and all the walks and events and the visits to Capitol Hill—all these events bring awareness and exposure to the disease, and they allow us to dream that a miracle of a cure is possible. All these events allow us to participate in so much and know that we’re making a difference. The doctors that are involved, the scientific advisory board, everybody at NephCure—my family considers them angels on our shoulders because they give us hope that one day a miracle of a cure can be found. You really are making a difference.

And I would just stress to people to get involved. People think NephCure just needs money. And we certainly do. But there are so many other ways to help—with your businesses or your workplace; it doesn’t always have to be money. Money is great, but people can also donate their time, goods, services, and supplies. They would be giving hope to so many people. Just get involved in some way.

We are so grateful and lucky to have someone as committed as Michael on our board. Michael continues to devote an incredible amount of time and energy to NephCure each year. We salute you and your work, Michael! Thank you for your dedication to finding better treatments and a cure for all who suffer from FSGS and Nephrotic Syndrome.

The Countdown to a Cure gala will be on Pier Sixty in Manhattan on Nov. 9th at 6pm. We invite you to attend, meet Michael, and help us change lives. You can visit the event page here. If you have any questions, please contact Lorraine Mackin at LMackin@NephCure.org.