In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the 12th profile in that series.

Margot Vaughan has been fighting ALS for more than two years. But she hasn’t been fighting alone.

“My family is totally devoted to me,” Margot said. “They keep me going and I’m lucky and grateful to have such an amazing family by my side.”

Margot and Thomas, an attorney, have been married nearly 31 years. They live in southwestern Connecticut, while their two daughters – Kirsten, 26, and Caroline, 23 – settled in the New York City area after finishing college.

“Being in New York, it’s easy to get home to Connecticut, which is great,” Kirsten said. “I can have dinner with my mom [on week nights] and Caroline and I go see her every weekend.”

Support From Many

Margot’s steadfast support system doesn’t end with her family. Her friends and her work “family” have been by her side since her diagnosis.

Margot has loved working in the global finance industry nearly her entire career. She has spent the last 23 years at Mastercard and currently serves as the company’s senior vice president for customized marketing.

“Mom first noticed weakness of her hands at work when she was trying to open her daily Diet Coke bottles,” Caroline said. “Her coworkers stepped right up from the beginning and opened them for her every day.”

The ALS Association has also been there for Margot.

“When I first got diagnosed, my friends went to [The ALS Association Connecticut Chapter] to learn more about the disease and what they could do to help,” she said. “The Chapter helped me find a caregiver and necessary equipment and think about the other things I would need as the disease progressed. They were a great resource!”

Miles For Margot

Margot first noticed ALS symptoms – muscle loss and cramping in her right hand -- in 2015.

“Like many others, I took about a year to be diagnosed and finally received my diagnosis in May 2016 at Cedars Sinai in California,” she said.

Prior to the 2017 Westport Walk to Defeat ALS last October, Margot had begun telling more people about her ALS diagnosis.

“There was an outpouring of commitment from our social circle to help fight this terrible disease alongside us,” Caroline said.

The “Miles for Margot” team – 160 members strong -- raised $46,000 and was not only the highest fundraising team in Connecticut, it was one of the highest fundraising teams of all time.

Kirsten ran as part of The ALS Association’s NYC Marathon team last year and raised more than $19,000.

Strength for Today

When asked what she wants people newly diagnosed with ALS to know, she said, “Don’t allow ALS to win. Eat as much as you want, while you can. Travel and spend time with your family. Get your finances in order. And tell your family what your wishes are.”

Margot receives treatment at Massachusetts General Hospital by the “wonderful and caring Dr. Merit Cudkowicz,” who has become her close friend.

“I’m confident that [Merit] will help this community find a cure,” she added.

Thomas was Margot’s primary caregiver for the first year.

“He took excellent care of my mom, while also balancing a full-time job [as] one of New York’s top litigators,” Kirsten said.

She and Caroline stepped in to help as their mom’s disease progressed but, eventually, caregiving became a full-time job.

“Now I’m lucky to have Natalee, who has worked with ALS patients for over 17 years, as my caregiver,” Margot said. “She has become part of the family.”

Prior to ALS, Margot’s personal interests included shopping, running, working out, reading, traveling, swimming, and watching sports. While some of those hobbies have had to be adapted, she still listens to books on tape and shops online. She also loves the New England Patriots and Boston Red Sox.

“I LOVE Tom Brady,” she said. “We have both a head-cut and life-sized stand of him and cheer him on for every game.”

Margot wants the Patriots to win every game, but her biggest wish is for strength to continue enjoying her life and her family. She also hopes her “experience and treatment lead to a cure.”

“My mom has always been a go-getter and would never let anything stop her,” Kirsten said. “If she wanted something, she willed her way to get it. The diagnosis and progression of the disease have been so shocking because it tests those qualities, but she shows me every day that she’s the same fighter she was when I was a little kid.”

Last week, Thomas, Kirsten, and Caroline moved Margot to her favorite place, Martha’s Vineyard. “We were able to build a house [here] just before my diagnosis,” Margot explained. “I get to stay here all summer!”

sALSa For a Cure

In partnership with Mastercard and Massachusetts General Hospital, Margot’s family recently kicked off the “sALSa For a Cure” social media fundraising campaign. (sALSa stands for “spread ALS awareness.”)

All funds raised through the campaign will go toward accelerating the identification of the best innovative therapeutic ideas worldwide and bringing them to people with ALS.

“When asked what’s one thing she wishes she could do again, my mom simply replied, ‘I just want to be able to dance with my husband again,’” Caroline said. “We learned my mom had always wanted to learn salsa but never had the opportunity. So, sALSa For a Cure was born.”

Learn how to participate in sALSa For a Cure here.

“My hope is to find a cure for this devastating disease,” Caroline said. “My mom was determined to find something to slow down ALS. I will carry on her mission until there’s a world without ALS.”

“We are too close to quit,” Margot added. “I believe we can find a cure if we all rally together.”