BIO2017: Ann Romney Shares Journey Through MS Treatments, Founding of Neurological Research Center

BIO2017: Ann Romney Shares Journey Through MS Treatments, Founding of Neurological Research Center June 21, 2017
By Alex Keown, BioSpace.com Breaking News Staff

SAN DIEGO – Multiple sclerosis is a debilitating disease that negatively impacts movement and causes great fatigue in patients. When Ann Romney was diagnosed with MS 20 years ago, she said the fatigue she felt was overwhelming.

In the early days of her diagnosis, she was so tired that the thought of physically opening an envelope was overwhelming to her.

“Let alone dealing with what was inside the envelope,” said Romney, the former first lady of Massachusetts.

Romney sat down with James Greenwood, chief executive officer of BIO, for a keynote address Wednesday in San Diego. During their talk, Romney pointed out how treatment for MS 20 years ago was much different than how patients are treated today. The first doctors she met with told her to go home and wait until she was “really sick.” Then, she said the doctors told her she could come back and they would treat her with steroids. However, Romney then met Dr. Howard Weiner who approached treatments much differently.

“He said the answer was to treat the disease aggressively and with the biggest guns we have,” Romney said.

That was music to Romney’s ears. When she first received her diagnosis she was frightened and imagined a life confined to a wheel chair.

“I thought my life was over,” she said.

Romney went with Weiner’s treatment plan and her disease was under control. Today she is able to devote her time to some of her biggest passions, her five children and 24 grandchildren, as well as competitive horseback riding. She recently competed at an event in Sacramento and won. She jokingly told Greenwood that winning is what she always expects.

But, Romney has not lost sight of her disease and the importance of treatment. She founded the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital in Boston. The center, which is now co-chaired by Dr. Weiner, aims to forge alliances dedicated to developing treatments for neurological diseases, including MS, Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors. Combined, those diseases impact more than 50 million Americans.

Today, Romney said it is important for patients, advocates and industry leaders to come together and combine their efforts on developing lasting and effective treatments for these debilitating diseases. Romney shared her book “In This Together: My Story” in hopes of being an inspiration to others. The title of the book was taken from something her husband, Mitt, said to her when she was diagnosed with MS at the age of 49. She said Mitt looked at her and said, “We’re in this together.”

Now though, Romney said that phrase must be far more inclusive than she and her husband.

“That was significant to me. To have each other… to help pull through,” she said. “We’re all in this together to find cures.”

Jeffrey Leiden, CEO of Boston-based Vertex and the sponsor of Wednesday’s keynote address, called Romney a great example of a critical role that patients and advocates can play in the life science ecosystem.

“Ann boldly shares her story about living with MS and sacrifices her own personal privacy in order to give hope to others,” Leiden said.

Massachusetts Gov. Charlie Baker agreed. Speaking before Romney came on, he called her a “remarkable person who has faced multiple sclerosis with a remarkable amount of courage.” Praising the work done at the Romney Center, Baker said Romney was able to use her family’s wealth to develop something so positive out of such a negative diagnosis.

“She is helping people find hope and possibility in respect to whatever their issue might be,” Baker said.

Romney shared her life’s experience with Greenwood, from her early days dating Mitt Romney to their early years of marriage. She said both sets of parents thought they were too young to get married, so they offered no financial assistance so the two would learn the “value of hard work.” She said that is something she and Mitt have sought to instill in their own children so they would appreciate the things they earn in their lives.

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