by Hoda Kotb
“People were saying to me, ‘You cannot start a nonprofit in New York City and compete with 9/11,’ ” she says. “ ‘There will be no money coming your way.’ ”
But Lindsay was resolute. She was confident in her plan and her ability to execute it. Her dad generously offered to donate enough money to pay her a modest salary for a year until she got things up and running.
“Without seed money from my dad, I wouldn’t have been able to give Fertile Hope my all,” Lindsay says. “I felt spoiled by his gift and vowed to pay it forward.”
Her financing was in order, but what of Lindsay’s emotional state? As a brand-new cancer survivor, she considered whether immersing herself in cancer issues would be too stressful.
“People warned me about that,” she says, “but I felt that at Fertile Hope I wouldn’t be talking about cancer every day. There would be a very small amount that I’d need to know about someone’s cancer to help them with fertility.”
She was determined to proceed and was also encouraged about the quality of her life in New York. News began brewing that Mayor Michael Bloomberg was spearheading a sweeping ban on indoor smoking that would include nearly all bars and restaurants. With her business plan completed and a start-up grant from the family she worked for on Nantucket, Lindsay launched the Fertile Hope website in October. She’d read online about an annual meeting of the American Society for Reproductive Medicine slated for October in Orlando and decided to attend. Her goal was to determine whether she was on the right path and to ask some of the doctors to be on the foundation’s medical advisory board.
“I had to go buy a suit. I had no ‘big girl’ clothes. I flew to the conference and when I got there I thought, Whose idea was this?” She laughs. “It’s just me and my flyer and I have no ‘MD’ after my name. I’m just a patient and I think this is important. I walked straight to the bathroom and started crying.”
Admittedly shy about networking, Lindsay was mortified.
“I have to walk up to strangers, start talking to them about this idea that is very personal, I have never fund-raised before, I’ve never talked to these doctors, and I am twenty-five. In retrospect, I was very young.”
In tears, Lindsay continued to doubt her decision to attend. But as the conference progressed, she began to meet doctors who introduced her to other doctors once they heard her pitch. By the first evening, she had scored an invitation to a dinner with doctors from Cornell, which houses one of the top IVF centers in the world. She was led into a car with Cornell’s Dr. Zev Rosenwaks, the grand poobah of IVF, who trained under the doctor who pioneered in vitro fertilization.
“I am in a black town car in the middle seat on the hump, and Dr. Rosenwaks is next to me, and I have no idea who he is, so I’m just talking to him. ‘Hi, my name’s Lindsay,’ and he said, ‘How old are you?’ We talked for a bit more and then again, ‘How old are you?’ When I told him twenty-five he said, ‘My children are your age.’ I remember thinking, Who cares? Is this really an issue?” she says, laughing.
Lindsay dined with some of the greatest minds in the IVF world, along with the most highly acclaimed published authors on the subject, and the very people who developed techniques she might employ one day to have children. Still not realizing the respect Dr. Rosenwaks commanded, Lindsay plopped down in the seat next to him since it was empty.
“We talked the whole night. He agreed to join my medical advisory board, he agreed that this was so important, and he wanted to help; he said Cornell would give me a grant.”
The doctor also told Lindsay he’d tell the influential pharmaceutical companies to talk to her.
“The next day I had all these leads with fertility pharmaceutical companies; I’m up in their suites that I didn’t even know existed.” She shakes her head in amazement. “So, at each step of the way, there was validation, validation, validation. And it took off from there.”
Now that Lindsay had identified that there was a real problem in communicating fertility options to cancer patients, she set out to find out why it was happening. She located a study published in the Journal of Clinical Oncology that asked oncologists whether they brought up fertility-preservation options with their male cancer patients. A sister study also asked male cancer patients if their doctors offered the information. Although 91 percent of the oncology physicians who responded agreed that sperm banking should be offered as an option to all men at risk of infertility because of cancer treatment, only 10 percent of them said that they informed their patients. Lindsay was most interested in the reasons why oncologists failed to broach the topic. According to the study results, the factors that were most likely to influence oncologists not to offer the sperm-banking option included:
• The patient is HIV positive
• The patient has a very aggressive disease and needs rapid initiation of cancer treatment
• The patient has a poor prognosis for survival
• The patient is open about being gay
• The patient does not have health insurance
• The patient already has at least one child
The results both appalled and motivated Lindsay.
“When I read that study,” she says, “that was when I decided, I’m in. I’m so in, because this is atrocious.”
While Lindsay agreed that curing cancer was the bull’s-eye in terms of the need for time and money, she had trouble understanding why the concept of offering up fertility preservation as a concern to cancer patients was so foreign.
“Focus on the cure, but in the meantime, there are some low-hanging fruit,” she reasons. “We can solve this problem.”
Fueled by all that she was learning, Lindsay dismissed other peoples’ suggestions to her to introduce Fertile Hope slowly.
“Everyone was saying, ‘You should start small. You should test the market and do a pilot program.’ And I thought, No way! If I do this only in New York, someone in Texas is getting sterilized! Someone in Chicago is getting sterilized! That was the biggest thing for me,” she says. “Once I uncovered the depth and breadth of the problem, every day it bothered me that people were being sterilized and they didn’t know it. Every day, right now, at every cancer center, they are being sterilized. And right down the hall is a sperm bank or a reproductive clinic, and they could be doing this, but they don’t know.”
Lindsay began to talk with oncologists. She was confident they were first and foremost concerned with saving their patients’ lives, but she wanted to know what else might be keeping the topic of fertility outside of the doctors’ examining rooms. It soon became clear that, because IVF was an emerging technology, many doctors had gone to medical school before it even existed. For doctors who weren’t familiar with the specialty, opening that can of worms—or sperm—was a deterrent to the conversation.
“They don’t want to get inundated with a million questions, it’s going to be a time suck, and it’s hard on the ego,” she says. “They don’t want to admit ignorance on something, especially on the first day when they’re trying to build your trust and confidence, and they don’t want to deliver a double blow. ‘Oh, by the way, you have cancer and you might end up infertile.’ And many have common misconceptions about the area, such as, ‘He came in without shoes; he can’t afford sperm banking,’ and when you ask the average oncologist how much he thinks sperm banking costs, he’ll say thousands of dollars and it only averages six hundred dollars.”
She knew Fertile Hope would offer oncologists a fast and easy way to refer their patients once they informed them that chemo could make them sterile.
“I’m not asking you to be a reproductive expert, but just like you advised, ‘Go get your MRI, go get your flu shot, go get your X-ray, go do all these things before you start chemo,’ just add, ‘Go talk to a reproductive doctor,’ or ‘Here’s a clinic.’ I’m not asking you to become an expert; I just need you to make a referral.”
A key problem Lindsay identified early on was that the world of oncology and the world
of fertility did not overlap. Not only did doctors in both fields never communicate, they didn’t see a need for it. Lindsay was a living example of why there indeed was a need; Lindsay and the more than 140,000 newly diagnosed cancer patients each year ages zero to forty-five (still in their reproductive years) deserved to be informed about their fertility options. She went about the business of presenting Fertile Hope.
“I had a business plan, plus I had two other plans of attack. ‘Here’s the market, here are the five ways we will achieve it. We can’t do it all at once so here’s how we prioritize.’ Yes, I had the patient story for when doctors said, ‘Patients don’t care about this’; I could refute them. And when reproductive doctors said, ‘Egg freezing is not an option; it doesn’t exist,’ I could say, ‘Actually, my eggs are frozen.’ But the real success of Fertile Hope stemmed from applying sound business solutions to a real problem.”
As with any compelling cause, there was a risk of relying too heavily on emotions to raise funds or to spread a message. Lindsay deliberately developed a measured tone to promote Fertile Hope.
“I don’t have a ‘PhD’ or ‘MD’ after my name, so if I go too far in the heartstrings approach, I lose them. They’ll think, This is an irrational, emotional patient, as opposed to a polished, professional, knowledgeable woman advocating for something she believes in. I do think there had to be some patient component or an unbiased third party involved, because if a reproductive doctor goes in to make the pitch, in Gucci loafers and a fancy outfit, and walks in to the oncologist and says, ‘Hey, send your patients to me. I can help them,’ it’s too salesy. But when a patient advocate comes in and says, ‘Patients want this. You guys need to start talking,’ it’s less of a sales pitch. At the end of the day it benefits the reproductive center, but it also benefits the patient.”
While Lindsay’s patient status added credibility, her age had the potential to diminish it. She was twenty-five, heading up a nonprofit organization, and asking for money and tremendous change in the medical world. Her youth turned out to be, in some areas, helpful.
“Like with Dr. Rosenwaks, I felt that he was more likely to talk to me because of my age. I reminded him of his children. ‘Let me help you.’ There’s something about that generation, and that’s great. ‘You’re young, you’re ambitious, you’re smart.’ But it also meant for me that we had to be overprofessional. I had to be overprepared, überprofessional, and I was criticized a lot. ‘This looks very for-profit,’ or ‘This looks very professional. How much money did Fertile Hope spend on it?’ But I felt like I had to err on that side.”
The Fertile Hope website looked so professional, Lindsay says people assumed Cornell gave the foundation hundreds of thousands of dollars, when in reality, the grant was around $4,000. She asked friends to write source code for the site and launched it for thousands, not hundreds of thousands, of dollars.
“It would hurt us sometimes, because people would say, ‘Oh, do you have a staff of forty?’ At our biggest we had six people. We didn’t have a lot of money, but we were so polished and professional on the front side. We had to suit up with a strong medical advisory board and an incredible board of directors. We had to pile on credibility everywhere we could, and then my age and lack of advanced degrees would be less of an issue.”
The year 2001 for Lindsay had been astounding. It began with a battle for her survival and was now ending with the cultivation of Fertile Hope. Lindsay had no idea she was in store for another milestone in just a month.
In January, Lindsay was invited to a friend’s birthday party at a New York City bar. She was introduced to a guy named Jordan Beck, who was with a woman she assumed was Jordan’s girlfriend. Lindsay was quite put off when Jordan started hitting on her.
“I thought, You creep! Your girlfriend is here! So, then he buys me a drink! And I take the drink and basically run away to the bathroom.”
The bathroom was located downstairs in the bar, and as Lindsay made her way there, she accidentally made her mark on someone heading up the stairs.
“I spilled my drink on a guy, who happened to be Marky Mark. Mark Wahlberg! Ha!” She giggles. “It’s so New York, right? So now, Mark Wahlberg has a Cosmo, a pink drink, all down his shirt. And he says, ‘Don’t worry, baby,’ and he takes off his shirt! And then, off he took.”
(Lindsay says the shirtless Mr. Wahlberg danced the night away at the bar.)
Jordan, who worked on Wall Street, e-mailed a mutual friend a few days later to ask if Lindsay was single. When he learned she was dating someone else, he asked the friend to let him know if that ever changed.
“Two weeks later,” Jordan says, “I got an e-mail saying, Hey, you might want to give her a call now.”
The call cleared up the identity of Jordan’s “date” for the birthday party. He was there with the girlfriend of his roommate, who was not a fan of large social gatherings. Jordan asked Lindsay to go out, but the date of the dinner fell on the night before she was scheduled to appear on Good Morning America with Nancy to discuss Fertile Hope. Hmm . . .
“I want to go out,” Lindsay recalls, “but I have to go to bed early, so I don’t want him to think I don’t like him if I leave early. So I had to say, ‘I have this big thing for work tomorrow morning.’ What I didn’t know was that my friends had already told him that I was going to be on. So, the next morning he’s e-mailing me from the trading floor where there are TVs everywhere, and he’s saying, ‘We’re all going to turn on the show.’ And I haven’t told him anything about my cancer, my fertility, Fertile Hope, nothing!”
A panicked Lindsay e-mailed him back, telling him she didn’t think that was a good idea and that she had some things she’d like to discuss in person.
“So, Jordan wrote right back and said, ‘I already know your story and I’m totally fine with it and I’d like to learn more about it all and watch.’ At that moment, I was like, He’s the one. It was my Kristin Armstrong moment. He already knew and he still asked me out!”
Lindsay appeared on the morning program and went for a drink with Jordan that night. She told him he could ask her anything.
“And he thought for a minute, and I was really expecting a doozy of a question, and he said, ‘What was it like? What was the set of Good Morning America like?’ ” She laughs. “And I was like, Okay, he knows the cancer piece of me but it doesn’t define me. I hadn’t had that experience yet. It was so cool.”
Jordan was intrigued by this unique girl from California.
“She was much different than any New York girl or any girl that I had met,” he says. “Really smart, calm, easygoing. Just a nice, normal, intelligent, attractive girl.”
The topic of children came up early in the relationship, by chance, during Lindsay’s third date with Jordan.
“He invited me to a client dinner and we were seated boy-girl-boy-girl around a round table, and the girl next to Jordan was very chatty and flirty and asked him how many kids he wanted. I thought, Whoa, girl, I haven’t even asked that yet! He said, ‘Four or five.’ And again, I thought, You’re the boy for me.”
Both Lindsay’s foundation and her relationship with Jordan were growing strong. She was very up-front with him that she didn’t know whether she was fertile, but that if she wasn’t, she had frozen her eggs and she was in touch with the best IVF doctors in the world if they ever needed to go that route.
“Jordan would always say things like, ‘We’ll cross that bridge when we get to it. I want you, and if we want kids we’ll make it happen, but we don’t need to worry about that today. We’re not trying to have babies today.’ For him it was like, ‘Why in the world would that be a reason I wouldn’t date you?’ ”
Jordan says he’s not sure why, but he never thought twice about it. He thought only that she was the type of person he wanted to date.
“You could tell from the ambition that she had and the way she lived life,” he explains. “And I could tell that very quickly. It was so opposite of any girl I’d ever met that
probably—very far back in my brain; these were not conscious thoughts—it was attractive.”
That summer, the nanny job was available again for the Nantucket family, so Lindsay took it and Jordan visited every weekend. She could work on Fertile Hope from there and enjoy a glimpse into family life with Jordan.
“It was almost like playing house. We thought, Wow, we could do this! This is fun! He’s an only child, so it gave him an idea of what it would be like to have five kids. We got exposed to those things together in a way that we both liked and wanted.”
Lindsay’s life was fulfilling both personally and professionally. She was running the foundation by herself and enjoying the challenge. The 800 number listed on Fertile Hope’s website and literature rang straight to her cell phone.
“Callers would say, ‘I was just diagnosed. What do I do?’ and I was like, ‘Okay, where are you? This is what you do.’ And again, they thought the organization was way bigger than it was. They had no idea they were calling my cell phone as I was cruising around New York.”
At first, she handled between ten and twenty calls per week, mostly from outraged cancer patients who’d already been rendered sterile.
“And that for me was incredibly motivating because it was validating,” she says. “I was still wondering, Did I make this up? Does this really happen to people? Most of the people I was talking to up front were survivors who were really angry, and that really for me validated the need and it fueled my fire.”
Lindsay’s business plan never included the arena of legal action. Fertile Hope’s mission was to inform people of their options. Don’t assume you’re fertile or infertile—get tested. Explore donor eggs or donor sperm. Is there any leftover sperm in the testicles? Lindsay was still amazed that the risk of sterilization was not on the informed-consent forms signed by cancer patients.
“The patient is in the land of the unknown. You don’t know what to ask. Of course, if you knew fertility was a risk you would ask. But the cancer doctors are in the cancer world; they know. The patient is thrown in and expected to sink or swim. What if you don’t by happenstance ask the right question?” she asks. “That shouldn’t be how you get critical information. And I think sterilizing someone is critical information.”
