RESEARCH OCTOBER/NOVEMBER 2015 BY LINDA CHILDERS Ann Romney Shares Her MS Story to Benefit Research Multiple sclerosis has been a tough teacher, but she says it has given her a deeper sense of compassion and empathy.

Ann Romney knows firsthand how stress and exertion can exacerbate a chronic neurologic condition like multiple sclerosis (MS). Diagnosed with relapsing- remitting MS in 1988, Romney, the wife of businessman and former Massachusetts governor and presidential candidate Mitt Romney, had been in remission for years when she had a flare-up during her husband's presidential campaign in 2012. It started with tingling and numbness and progressed to dizziness and poor balance. Clockwise from left: Ann Romney in Moorpark, CA, in 2015; with her husband, Mitt, and their five boys in a family portrait in 1982; interacting with locals in Peru in 2013 during a Charity Vision mission trip; bonding with her horse in 2015; with Mitt at Bittersweet Farm in Stratham, NH, in 2011, where Mitt announced his presidential candidacy; speaking with one of many Americans on the presidential campaign trail in 2012.

"The flare-up was a reminder that I need to pace myself and monitor my energy levels," says Romney, who was prescribed steroids to control the relapse. That was one of her low points during the campaign, she recalls, but being open about her illness brought unexpected moments of joy and recognition. "On the campaign trail, many people with MS would seek me out at events to encourage me and thank me for giving the MS community a voice. Often they had been standing outside in the heat for a long time, and when I would reach them, they would nearly collapse," she says with a mixture of admiration and sympathy.

Pay It Forward Those moments have stayed with Romney, and now that her MS is in check again, she wants to give back. Last October, she and her husband established the Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital in Boston. The idea was sparked by conversations with her physician, Howard Weiner, MD, a neurologist at Brigham and Women's, a professor of neurology at Harvard Medical School, and a member of the American Academy of Neurology (AAN), and his research partner, Dennis Selkoe, MD, a Fellow of the AAN (FAAN), about the overlapping discoveries in treatments for neurologic conditions such as MS and Alzheimer's. (Dr. Weiner and Dr. Selkoe are co-directors of the center.) For example, Romney says, scientists researching MS at Brigham and Women's created an antibody for regulating aspects of the immune system and shared the information with researchers working on glioblastoma, a deadly type of brain tumor. The researchers determined that the antibodies also had an effect on brain tumors—a discovery they hope may lead to new treatments.

That's the kind of collaboration Romney wants to encourage at the research center, which will focus on accelerating cures and treatments for MS, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Parkinson's disease, and brain tumors—chronic conditions that affect about 50 million people in the world, according to the National Institute for Neurological Diseases and Stroke (NINDS).

Romney aims to raise $50 million for the center through personal donations from her and her husband, proceeds from her cookbook, The Romney Family Table (Shadow Mountain 2013), online donations through the center's website, community fundraising, planned giving, and proceeds from her new memoir, In This Together: My Story (Thomas Dunne Books, September 2015).

"My goal is that through the research center and my new book, I can continue to bring neurologic diseases to the forefront and increase overall awareness, support, and funding," she says. She also wants to give a voice to anyone with a neurologic condition, so she created a website called 50MillionFaces.org and launched a social media campaign around it to encourage those with neurologic diseases to share their stories.

In Her Own Words Romney's also sharing her own story, which began with numbness on her right side. She initially dismissed it as a pinched nerve, but when she started exhibiting other symptoms like foggy thinking, poor balance, and a fatigue so profound she couldn't get out of bed, she suspected something more serious. She called her brother, Jim, a doctor, who urged her to see a neurologist. When a magnetic resonance imaging (MRI) scan revealed lesions in the center of Romney's brain, the neurologist diagnosed her with relapsing-remitting MS. This form of the disease is characterized by clearly defined attacks of worsening neurologic function, called relapses or flare-ups, followed by periods of complete or partial recovery, called remissions, during which symptoms improve and there is no apparent progression of the disease. The condition affects 2.3 million people worldwide and is two to three times more common in women than in men, according to the National MS Society. Clockwise from top left: Ann Romney on the campaign trail in 2012, where she met many people with MS; reading to four of her grandchildren; with Mitt, holding one of their newborn grandchildren; and with her mother, Lois Davies.

At the time of her diagnosis, Romney says she didn't have many treatment options. Disease-modifying medications had only been introduced a few years earlier, and most neurologists relied solely on corticosteroids to shorten relapses when they occurred. "My neurologist said there was nothing he could do for me until I became really sick," Romney says. "I was shocked that even though I felt so bad, I wasn't being offered treatment."

She was also terrified and depressed, worried that the disease was progressing rapidly. Researching her condition on the Internet only compounded her fear that she would soon be in a wheelchair. Then a friend told her about Dr. Weiner, who was taking a proactive approach to treating patients with MS.

Early, Aggressive Treatment By the time she met with Dr. Weiner, a month after her diagnosis, Romney was falling all the time. "He started me on massive doses of intravenous steroids, which I really believe saved me, and then continued with disease-modifying treatment," she says. "I liked his philosophy that the earlier and more aggressively you treat MS, the better chance you have of the disease going into remission."

Other MS experts agree with Dr. Weiner's philosophy and approach. "Diagnosing and treating MS early probably increases the chances the patient will do well," says Aaron Miller, MD, FAAN, a professor of neurology at Mount Sinai School of Medicine in New York and medical director of the hospital's Corinne Goldsmith Dickinson Center for Multiple Sclerosis. The key is to pay attention to early symptoms like "weakness, numbness, and tingling—sometimes in one limb, sometimes multiple—and optic neuritis, a vision disorder that patients describe as looking through foggy glass," he says.

Back in the Saddle After the infusion of steroids, Romney still had fatigue and numbness, but she was able to walk again and felt her condition was stabilizing. The fear of losing more function prompted Romney to resume horseback riding, one of her childhood passions. "I decided I needed to go back and do what I loved before I couldn't do it anymore," she recalls.

Still weak, Romney could ride for only a few minutes each day, but she slowly increased her time on the horse and now considers riding a godsend. It has improved her strength, balance, and energy—and gives her another reason to get out of bed every morning. In fact, she says, if she is off a horse for longer than two to three weeks, her family begins to see her fade. "Riding feeds my soul," she says, adding that the quiet time and enhanced physical benefits also help her beat fatigue.

For people with MS who can pursue it, horseback riding can be both physically and psychologically helpful, says Bonnie Gerecke, MD, chief of neurology at Mercy Medical Center in Baltimore, MD. "It can improve posture, strengthen core muscles, and increase mobility, among other benefits."

Exercise in general is good for people with MS. Studies show that it can ease fatigue, improve bladder and bowel function, and lift spirits, according to the National MS Society. For example, a study conducted by the Kessler Foundation, a non-profit dedicated to improving the lives of those with disabilities, published in October 2013 in Neurocase: The Neural Basis of Cognition, found that aerobic exercise helped to improve both brain and memory function in patients with MS.

There are a few caveats, however, says Dr. Miller. People who are sensitive to heat and notice worsening or reappearing symptoms when their body heat rises should not overdo physical activity. They should also drink plenty of water and exercise indoors during the hottest part of the day, typically between 10 am and 2 pm. Fighting Fatigue In addition to exercise, Romney, 66, insists on getting at least eight hours of sleep every night to keep fatigue in check. Dr. Gerecke agrees that fatigue is a common MS symptom, and encourages her patients to determine its cause and consider treatment options.

"It's important to rule out other medical conditions such as hypothyroidism, anemia, sleep apnea, or depression," Dr. Gerecke says. "I also inquire about sleep habits and determine if there are any modifiable factors that can improve sleep."

For instance, some people with MS wake up frequently during the night to urinate. Dr. Gerecke says these symptoms are often alleviated after they make some dietary or behavioral changes, or by taking medications such as tolterodine (Detrol) and tamsulosin (Flomax), which reduce urinary frequency.

If depression is contributing to fatigue, Dr. Gerecke may recommend cognitive behavioral therapy or antidepressants. Physicians also sometimes prescribe drugs that encourage wakefulness, such as amantadine (Symmetrel) and modafinil (Provigil), she adds. "Neither medication is approved by the US Food and Drug Administration (FDA) [for this purpose], nor is there a proven benefit, but they are both used in clinical practice by some physicians."

Alternative erapies Romney is not currently on a disease-modifying therapy, but she emphasizes that this may not be the best option for everyone, since MS symptoms are different for every individual.

Dr. Gerecke agrees. "Most neurologists recommend their patients with MS be treated with disease-modifying therapies," she says. "People who are either asymptomatic—they have MS but no disability—or have no progressive disease radiographically and clinically can discuss the option of foregoing treatment." But they should be monitored very closely for both clinical and radiographic progression of disease, and treatment should be initiated at the first sign of progression, she adds. Romney credits acupuncture and reflexology with helping her manage certain symptoms. For example, in reflexology, pressure is applied to specific points on the hands and feet that are said to correspond to certain organs, which helps to alleviate much of her pain and numbness, she says.

The evidence on complementary treatments is mixed, partly because of the individual nature of the disease and because the severity of symptoms may differ from one person to another, says Dr. Gerecke. "Individuals should work with their physician to discuss the role of these therapies and their potential benefits, and to determine if they are covered by insurance," she says.

Since her diagnosis, Romney says she works hard to maintain a healthy weight and to eat a balanced diet. "I avoid sugar and alcohol and eat very little bread. I also drink a lot of green smoothies made from kale, spinach, and ginger," she says.

Researchers are learning more and more about how diet affects MS, including that a vitamin D deficiency may play a role, says Dr. Gerecke. For example, a study conducted by researchers at the Harvard School of Public Health and published in JAMA Neurology in 2013 found that among people in the early stages of MS, those with higher blood levels of vitamin D had better outcomes during five years of follow-up. Some data also suggest that a low-salt diet may reduce the risk of developing the disease. "Smoking is also associated with an increased risk of MS and a more rapid progression in patients with established disease," Dr. Gerecke says.

Deciding to Share While Romney received a mostly positive response after revealing her diagnosis during her husband's presidential campaign, not everyone with MS is as fortunate. That's why the decision to go public is so personal, says Dr. Gerecke.

"I advise my patients to speak to their employers about their MS and tell them that the symptoms can be variable and unpredictable," Dr. Gerecke says. "Good employers should make accommodations so their employees can perform their jobs to the best of their capabilities and feel comfortable at work." For example, if someone has bladder dysfunction that causes frequent urination, that employee should be allowed to take bathroom breaks as often as is necessary without question, Dr. Gerecke says. Or, if a person with chronic leg pain has a job that requires prolonged standing, he or she should be allowed to have access to a chair for periodic sitting to minimize the pain and discomfort.

Continuing the Conversation Grateful to be in remission, Romney is doing everything she can to help others with MS. She invites them to make their voices heard on 50MillionFaces.org so other people with neurologic conditions will feel less alone and more hopeful. That's why she chose to open up about her disease.

What surprised her most, however, was the fierce love and support she received in return. "The people I have met on this journey have enriched my life in countless ways."

Funding Hope The Ann Romney Center for Neurologic Diseases supports research into new drugs and advancements, which may lead to cures.

Like many people with multiple sclerosis (MS), Ann Romney says the day she received her diagnosis was the scariest of her life. Since then, she says she's been lucky to have access to the best care, treatment, and therapy. She credits her doctor, Howard Weiner, MD, a neurologist at Brigham and Women's Hospital in Boston, a professor of neurology at Harvard Medical School, and a member of the American Academy of Neurology (AAN), for giving her and her family a reason to feel hopeful about the future. That, in turn, inspired the Romneys to establish a research center at Brigham and Women's devoted to MS, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Parkinson's disease, and brain tumors. Ann Romney with Howard Weiner, MD (left), and Dennis Selkoe, MD, FAAN (center), co-directors of the Ann Romney Center for Neurologic Diseases, which will be in the Brigham Building for the Future (rendering above, right), due to open in 2016.

Dr. Weiner and his colleague and fellow co-director of the center, Dennis Selkoe, MD, a Fellow of the AAN (FAAN), have been collaborating on developing vaccines for MS and Alzheimer's. In the case of Alzheimer's, he says, a vaccine could detoxify clumps of the amyloid-beta proteins that cause neurons to die. A vaccine for MS could use regulatory cells to attempt to shut down what Dr. Weiner calls the "killer cells" that allow the disease to advance.

It's an exciting time in brain research right now, Romney says. "We have a drug in development for the first time for ALS, which we hope to make available in a year or two. Researchers are also working in the lab on a nasal vaccine for Alzheimer's."

The new center allows Dr. Weiner and more than 250 scientists and investigators to enhance and deepen their research, as well as collaborate with researchers at other centers in the United States and overseas.

Diving into MS Research Dr. Weiner has long been at the forefront of MS research. In 2000, he established the Partners Multiple Sclerosis Center at Brigham and Women's Hospital, which combines clinical evaluation, MRI imaging, and immune monitoring. He is also the author of Curing MS: How Science Is Solving the Mysteries of Multiple Sclerosis (Three Rivers Press 2005).

"When I started working on MS more than 30 years ago, there were no treatments," he says. "Today's disease-modifying drugs can reduce MS flare-ups as well as slow progression."

Great strides have also been made in identifying risk factors for MS, says Aaron Miller, MD, FAAN, a professor of neurology at Mount Sinai School of Medicine in New York and medical director of the hospital's Corinne Goldsmith Dickinson Center for Multiple Sclerosis. "We are beginning to create a profile of epidemiologic factors, such as smoking, vitamin D deficiency, and having the Epstein-Barr virus, that are associated with greater risk for developing MS and, in some cases, with increased disease activity," Dr. Miller says.

Customized Treatment Plans Several new MS drugs are also in different stages of development, as are research studies investigating new treatments. Dr. Weiner's own Comprehensive Longitudinal Investigation of Multiple Sclerosis at Brigham's and Women's Hospital (CLIMB) study, which has enrolled more than 2,000 participants, is examining ways that personalized medicine can be used to treat people with MS.

Although many MS treatments exist, doctors can't predict how patients will respond to them in the long run, Dr. Weiner explains. "We hope to learn why some patients do well on certain therapies and others don't. We'd also love to find a biomarker that could be determined through a simple blood test."

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Researchers are also focusing on treatments for the progressive form of MS, which have been lacking, Dr. Weiner says. And clinical trials are looking at whether stem cell therapies can help people who have failed on other MS drugs.

MS Resources The Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital: 617-424-4300 The National Multiple Sclerosis Society: 800-344-4867 The Multiple Sclerosis Association of America: 800-532-7667 MS Connection online support groups: 866-673-7436 (for the MSFriends helpline)