by Ann Romney
More than thirty members of the Sabins’ church volunteered, including my brother Jim and a real estate investor named Graham Bullick. (After those two were selected, Jennifer’s father quietly offered them an opportunity to change their minds, telling them he could have them eliminated for medical reasons. They said no.) The operation, in which surgeons removed parts of the lungs from the three people involved and implanted the new lobe into Jennifer’s body, took more than two hours.
For the next few days, as Jennifer fought for her life, she was connected to supporting medical equipment and more than a dozen tubes and intravenous lines. Eventually she stabilized—and began improving. As she later wrote about the surgery, “Mom and Dad came into the room and Mom asked me how I felt. I took a deep breath, something I hadn’t been able to do in a long, long time, and began weeping … [C]ystic fibrosis was forever gone from my new lungs, and I was going to live.”
Less than three weeks after the operation, my brother Jim was back to work, performing eye surgery.
My turn to make a big contribution came months after the election. Eventually Mitt and I got back to our normal lives. The phone rang often, with various offers for things in which one of us might get involved. One that I considered was being a contestant on Dancing with the Stars. That show is among my guilty pleasures. Not only do I watch it, but in early 2013 Craig and I attended the season finale. Coincidently, among the people we met at the studio that night was Montel Williams, who also has MS, and is as big a fan of the show as I am. So I was flattered when producers invited me to participate the following season. But I realized that not only was I not as flexible as I would have needed to be, but it would have required a time and energy commitment I wasn’t certain I could fulfill. The last thing I wanted to have to do was start and then drop out if the rehearsals caused a relapse. And when I saw that Dorothy Hamill had been picked to participate, I was glad I’d made the decision; I didn’t want to compete against her!
There also was speculation that after Senator Kerry resigned to become secretary of state, I had been asked by the Massachusetts Republican Party to run for his seat. There were people who believed it would be a fun thing for me to do and that I could win. But nobody asked me, and I wondered if anyone had actually stopped to consider if it would have been fun for me. Having been deeply involved in state and national politics, I can say without reservation, there isn’t a chance of my ever running for office. There are many things I consider fun; a political campaign is not one of them.
But there was one thing I did say yes to, and it came as a surprise to me, as it was not something I had ever thought about. During the campaign I had been in touch with Dr. Weiner several times. I would call to tell him, “I haven’t forgotten. This is going to be my initiative if we win.” During one of those conversations, he told me that an Alzheimer’s vaccine they were developing had produced some really exciting results in the lab and they were getting ready to test it. An Alzheimer’s vaccine? That really caught my attention. That would change millions of lives and save billions of dollars. That’s unbelievable, I said. It was my turn to get excited. Maybe we should broaden what we want to do, I suggested. Among those things that I most regretted after the election was what we might have been able to do if we’d won.
When I went to see Dr. Weiner for my annual CLIMB evaluation, we started talking about “what might have been” wistfully. Then we suddenly thought, why not do it anyway? Why not go ahead? It wouldn’t be as big, it probably wouldn’t be as effective, but it would be something. The more we discussed it, the more excited I became. We had already broadened our concept to include Alzheimer’s, but as we talked, we realized we could do something bigger in neurologic diseases. More than two and a half million people have MS, but when you combine them with the number of people suffering from Alzheimer’s and ALS and Parkinson’s and brain tumors, suddenly the numbers rise drastically. In fact, as I’ve learned, neurologic diseases affect more than 50 million people worldwide. In some way, almost every family everywhere is brushed with the consequences of a neurologic disease.
The biggest challenge facing the center was fund-raising. Dr. Weiner estimated that he and Dennis Selkoe had spent as much as 25 percent of their time raising funds to keep the center moving forward. Money buys time and research, he told me. Later Dr. Selkoe told me a story about traveling to Japan with Dr. Weiner in 1990 to try to raise money to further their research. As they walked around the Imperial Palace in Tokyo they talked about the future, and what was possible, and how much money it would take. A lot, they realized, a whole lot. And the only place to get as much as they needed was from American philanthropy. Howard Weiner summed it up best: his exact words were “Research is like crossing the desert. I don’t want to go across the desert without enough water.” That was one area where I believed I could be helpful.
Most research centers focus on a single issue, but clearly there is a connection between several significant neurologic diseases. As Dr. Weiner explained it, medical research was done in silos, but if we really wanted some quick breakthroughs, there would have to be a lot more collaboration. As he and Dr. Selkoe had learned through four decades of friendship and collaboration, the more detectives working the crime scene, the more evidence is going to be uncovered. There is no question that any discovery made about how the brain functions might have application to other conditions. While there was a lot of research being done in various areas, there was little cross-pollination. Bringing together scientists studying several different diseases would greatly increase opportunities for fund-raising. Dr. Weiner and Dr. Selkoe eventually settled on a platform consisting of five diseases that affect the brain: MS, Alzheimer’s, Parkinson’s, ALS or Lou Gehrig’s disease, and brain tumors. Dr. Weiner went through the overlapping relationships among each of these diseases with me, pointing out, “The mechanisms in one disease exist in the others.” Changes in the immune system of a patient with MS, for example, were found in the immune system of patients with ALS. I was surprised by the inclusion of brain tumors, believing, as most people do, that tumors would not have a clear relationship with MS or Alzheimer’s. But of course they do. Both MS and brain tumors, Dr. Weiner explained to me, are related to regulatory cells, T-cells. In MS, a lack of regulatory cells provokes the immune system into being overactive; in brain tumors, the tumors somehow cause the immune system to create too many regulatory cells, which eventually overwhelm the immune system. “We hypothesized that if we used a new antibody we found in our MS research to knock down the regulatory cells in tumors,” Weiner explained to me, “then the immune system may be more effective and the tumors would shrink.” He smiled and added, “And that’s actually what we found.”
Remembering Natalie Crate, I was thrilled that we would be able to include finding a way to prevent and treat brain tumors as one of our initiatives.
Proving there is overlap among these diseases, Dr. Selkoe told me that his lab recently “made a new discovery in Parkinson’s, based on our Alzheimer’s work, but that still has much further to go.”
Together Dr. Weiner and I began thinking of ways I could be helpful in the effort to create a larger neurologic center. How wonderful it would be to help provide an answer for all those MS patients who approached me asking for advice. While dancing with many stars would have been a lot of fun, this was something I could do that might make a real difference in people’s lives. I remembered the terror I felt when I was first diagnosed and read all this scary stuff, and I thought how wonderful it would be if there was one place newly diagnosed patients could go that would provide complete and accurate information, as well as the encouragement they needed, at that most vulnerable time. Among the things I thought we could do was create a community to fill that need—a place that would, among other things, help people understand their symptoms and give them hope. Putting my name on it was never part of my thinking. It’s not the type of thing Mitt and I have ever done. But that’s what ended up happening.
Tagg’s business partner, Spencer Zwick, had served as the finance chairman for Mitt’s campaign, and successfully raised almost half a billion dollars. He is a wonderful, giving man, whom we sometimes refer to as our sixth son. He is an expert at raising money for charities. So I asked him to meet with Dr. Weiner to determine the ways in which I could be especially helpful raising funds for the center. Spencer is sensitive to this issue because his own son has a form of MS, so he is quite knowledgeable about the fight. Apparently during their meeting he said, “You know, if we really want to make this big, we should ask Ann to put her name on it.”
It says quite a bit about the two doctors, who have devoted their lives to creating this center, that rather than wondering why their names, which rightly belong, aren’t on the stationery, they instantly embraced this concept and then enthusiastically began trying to convince me to agree to it. “I’m pretty uncomfortable about that,” I responded. “Why don’t we go out and look for a really big donor and name it after them.” Believe me, I knew the value (to some people) of naming rights. Mitt, too, wasn’t especially comfortable with the idea.
But Spencer, more than anyone else, pushed. It’ll give us great visibility, he insisted. Howard wanted me to be the center’s so-called global ambassador, a really nice way of describing a fund-raiser, but he also said that my active participation would serve to encourage patients: You’ve got a really positive story to tell, he said. This’ll give you a platform to tell it.
Mitt told me the story of the world-renowned Dana-Farber Cancer Institute. Dr. Farber had made a lot of progress in fighting that disease, but at one point he realized he needed to find someone who could connect to the philanthropic community and get the attention of political leaders, so he enlisted Mary Lasker. With her husband, she founded the Lasker Foundation, and brought tremendous resources to the fight against cancer. At one time people were very reluctant to talk about cancer. The “Big C” they used to call it, and they’d whisper about people who had it. Mary Lasker relentlessly campaigned throughout the world, using the techniques of advertising and promotion, to bring attention and, more important, money to the fight—including the Charles A. Dana Foundation, and hence the name Dana-Farber. Mitt believed that, like Mary Lasker, I had the ability to bring people together, speak to political leaders, and make the necessary connections among different institutions, the private sector, and the government.
If I had any doubt about what my function would be, Dennis Selkoe explained it to a reporter. “We weren’t looking for Ann and Mitt to create an endowment,” he said, which by the way was a great relief to my wonderful husband. “That was never the idea. The thought was that she could use her passion and her ability to reach out to people all over the world to make our case that brain diseases shouldn’t be accepted. Cancer and cardiac disease are way ahead of us in terms of getting the attention that can be converted into fund-raising; the brain has been more of a black box. If people die of a heart problem or a kidney problem or cancer, a pathologist already has permission to conduct an autopsy—but if someone dies of a neurologic disease, a family member has to sign a separate permission to allow the pathologist to examine the brain, as if there is something taboo or unusual about it. Frankly the mystery surrounding the brain is one reason we haven’t made more progress. And I think Ann can help us get attention.”
All these thoughts were incredibly flattering, and the concept really began taking shape in my mind.
Which is how the Ann Romney Center for Neurologic Diseases—note that we kept the two doctors’ original “Neurologic”!—at Brigham and Women’s Hospital was born. Long before I got involved, the place was unique, as it brought together doctors and scientists working in different neurologic fields in a way that had not been done before. As Dr. Weiner said, “This is a place where we have interactions that don’t normally happen. And we have them every hour, every day.”
The broad concept of the center is to have a single place where neurologic patients can get diagnoses, advice, and treatment, and if there is no treatment, they can participate in the ongoing research, as I’m doing, to find one. They can sign up for the studies and, if possible, the experiments. As Dr. Weiner explained, “What makes this center different is our integrated approach. By convening a global consortium of researchers and scientists working together across each of the five disease states, we are creating a novel and collaborative approach for biomedical research, which will lead to new breakthroughs, therapies, and clinical trials for patients.”
The initial goal we set was to raise 50 million dollars, slightly more than the entire annual budget for the existing institute, which would be spent both on brick and mortar—the center is moving into a brand-new building—more technology, and the hiring of as many as fifty additional researchers. Mitt and I donated some seed money to help the center begin to grow.
Of course I recognize that my name is associated with politics, but this effort rises way above that, so we set out right at the beginning to make certain the center would be absolutely nonpolitical. One of the first people to join our absolutely nonpartisan board, for example, was Marc Mezvinsky, who is married to Chelsea Clinton and has a close relative with MS. In 2013 that relative went to see Dr. Weiner, who encouraged this person to become much more aggressive in their treatment. Also serving on the board is Robert Kennedy’s grandson, Congressman Joseph P. Kennedy III; TV personality Meredith Vieira, whose husband, journalist Richard Cohen, was diagnosed with MS more than four decades ago; Mitt; Spencer Zwick; Montel Williams; and Fox Business Network host and expert Neil Cavuto, who has been diagnosed with the progressive form of the disease. “Having difficulty talking isn’t good in my profession, but my wife welcomes it,” Cavuto said, laughing. Although he usually memorizes his scripts in case he can’t read the teleprompter while taping his show.
Near the conclusion of the dinner that we held to celebrate the announcement of the center, we asked several people to stand up spontaneously and talk about one of the five diseases and how it had impacted their lives. One of them was Nancy Frates, whose son Pete’s battle with ALS was the inspiration for the Ice Bucket Challenge. This was the best possible example of “putting a face” on each disease. The emotional impact was truly astonishing: most of us in the room were crying, as much with empathy for the things that each of these people had suffered as with a kind of relief that someone was finally bringing together some of the best people in the world to mount a large and continuing attack on these enemies.
I’m the front woman. My primary job is to raise awareness of the existence of the center, and the challenges we all face from this array of neurologic enemies, and to emphasize the need for funding. A question that I have been asked by people who have connected my public visibility, my faith, and the center is whether I believe my getting MS was all part of a greater plan to put me in a position to help change countless lives. It is a fair question and it is easy to answer:
No.
I believe life is almost indiscriminate. Life happens. It hits us the way it hits us, and then we can choose to do with that reality whatever we choose. I don’t see it as being part of any Grand Design. I don’t think that God had a hand in this, that He reached down and decided, I’m going to make Ann sick and someday she’s going to have a larger impact. But what I do believe is that we each have to play the hand we’re dealt, and that life is a lot nicer for all of us if we help each other tote that heavy bag of rocks. The hope is that each of us can find a small niche in which we can make a difference. My brother Jim was able to see the lovely young life he was able to help save. And the center turned out to be the place where I could do the most to help. Fortunately I went into remission, and because of that I am able to bring people together as a force for good. I have always believed that each person doing a little will add up to a lot of change.
Mitt admits he is sometimes astonished to see the shy young girl he fell in love with in high school standing up in front of a large crowd addressing them
forcefully. Here’s a little secret: me, too. Several years ago while straightening our house, I found a photograph of me that was taken the first Christmas after I was diagnosed with MS. I’m sitting in a chair. The chair is gray, I’m wearing a gray sweater, my face is gray. My shoulders are hunched, and I seemed to be thoroughly defeated. When I looked at that picture, it brought me right back to how I felt at that time: gray. I was sad and deeply depressed. My future was bleak. I remembered those horrible feelings. Around me, everyone was getting ready for Christmas, and all I was capable of doing was sitting in that chair. After a few seconds I ripped up that picture. I ripped it into as many pieces as I could, telling myself, I don’t ever want to go back there again. I don’t want to be in that dark place again, ever. I wish now that I hadn’t ripped up that photograph. I wish I could show it to anyone struggling with their burden—as I stand tall and tell them they have a future.
I’m the ultimate late bloomer. I got pushed into places I didn’t want to go, but because of that, I grew. It was when I got put in a very uncomfortable situation that I realized, maybe for the first time, how much strength I had. Certainly because of the roads Mitt and I have followed, I had a public voice. I realized that I had the potential to influence the direction of the research and impact the lives of many people. For many years I had to lean on others, and now I had arrived at a place where they could lean on me.
I’m strong now, maybe stronger than I have ever been in my life, and I know I can help improve the quality of people’s lives and support their fight against these terrible neurologic diseases. I’m thrilled to be able to get up and speak in front of an audience. I’m warning you, when there are people out there ready to donate money, don’t get between me and a microphone. Where once I was hesitant, now I am ready. I know who I am, my feet are planted solidly on the ground. Nobody intimidates me, nobody.