Winning the Carcinoid Battle - Episode 9
Shubham Pant, MD: Tell me a little bit about your advocacy about. You told me before you were organizing conferences. Tell me about the growth of the organization, I’m fascinated.
Maryann Wahmann: So, we first started with a small support group in Long Island. And actually, last month, we had a meeting and we’re starting to do chapters across the country for support groups. We’ve always helped support groups around the country with materials and things so they can run their meeting. So, we started with the support group and then we started doing some conferences. And we had our first conference in 2003. It was a half-day conference, I had no money whatsoever, and I went to the Marriott Hotel and said, “I’d like to do this half-day conference,” and they were like, “OK, fine.” And then I asked, “OK, now that I’ve scheduled this conference, how am I paying for this?”
And so, we were like, “OK, we’ll do a fundraiser.” So, we had a dinner dance the night before, we raised $10,000, and we went and paid the Marriott the $10,000 for the conference. And little did they know that we really didn’t have the money behind us and we were very lucky. And so, that’s how it started. It was just a small little conference and now we do conferences across the country. We do regional conferences where we have about 100 to 175 patients and caregivers come, and five doctors speak, and then we do the national conference. And at our last national conference, we had over 550 people in attendance. We had a three-day event and we had approximately between 25 and 30 doctors speaking.
Shubham Pant, MD: Wow. It’s amazing. So, Larry, when you were diagnosed, did you call Carcinoid Cancer Awareness Network?
Larry Pleasant: I did.
Shubham Pant, MD: You did! Did Maryann pick up the phone?
Larry Pleasant: Maryann picked up the phone and that was the first time we talked, first time we met. And I called her because, as she said, there was so little credible information available that I called.
Shubham Pant, MD: So, how did you find the Network?
Larry Pleasant: Someone told me about it. I looked online and found it, found the address and the phone number, and went from there. And she sent me a wonderful package of information and it was fantastic.
Shubham Pant, MD: That’s wonderful. Do you guys remember the first discussion? Did you ask, “Hey, can you guys help?” And they said, “Yes, we can”?
Larry Pleasant: Yes, that’s pretty much the way it went.
Maryann Wahmann: With our organization, we have a hotline that’s open 365 days a year. So, when a patient calls or the family member calls, they actually speak to myself, they speak to Robert—my husband—or sometimes my daughter will answer the phone. We run the Foundation out of our home. It was by accident that the hotline started.
Shubham Pant, MD: Like your personal telephone number?
Maryann Wahmann: My personal telephone number was given out in 2002, and it just snowballed and people just started calling us. And so, on the way to my son’s wedding, I was in the limo talking to patients; 2 o’clock in the morning. People don’t realize that they’re calling our house and the phone rings and the first thing you think is, “Oh my God, what’s going on? Who’s hurt? Who’s whatever?” I always answer the phone and that’s how it starts. So, it just kind of snowballed. Like I said, it was not my plan to do this, but it’s my life now.
Transcript Edited for Clarity