Sarah Locke of Henniker had climbed most of the state’s 4,000-footers before 2019.
She had competed in Spartan races and other athletic events. Locke considered outdoor activity a huge part of her lifestyle.
But after traveling to sweltering Texas that year, she began losing feeling in her lower body and experienced a tightening sensation in her core. A series of tests led to a diagnosis of multiple sclerosis, an autoimmune condition of the central nervous system that can cause chronic pain and loss of different functions in the body, including mobility.
Her new reality sent her reeling. Yet as she navigated doctors’ appointments, new medications and various treatments, all while learning as much as she could about her condition, Locke sought ways to take agency in her life.
“I wanted to show people that it’s not devastating,” said Locke, who founded the nonprofit Locke’s Promise earlier this year to support people with MS in New Hampshire. “It’s definitely taking lemons and making something out of them. So, I decided with my hiking tribe that I was going to hike Mount Washington.”
It had been a bucket list climb for her, one she wanted to do before she wouldn’t be physically capable anymore. She turned the hike into a fundraiser and raised over $10,000 for the National Multiple Sclerosis Society, documenting her journey on social media along the way.
At the summit, she placed a rock painted with an orange feather.
“When I put it down, I sort of bid farewell to the weight of MS on me. And I took it off my back. I took it off my shoulders,” she said.
She finished the hike after 16 hours with legs that felt like “mush” and spent several days recovering.
One question at the forefront of her mind kept her wondering: “How can I make this bigger?”
‘Make it happen’
There are around one million people living with MS in the United States, with around 20,000 individuals in New England and 2,500 in New Hampshire alone.
Worldwide, the condition impacts about 2.9 million people, according to statistics published by Locke’s Promise.
Locke described the condition as “an invisible disease” that can impact anyone regardless of age, gender, race, religion or creed. You can’t necessarily tell from looking at someone what might be going on inside, she said, and there’s no cure.
In 2023, she organized a Climb the Peak fundraiser at Pats Peak that raised $16,000 for the National MS Society. The second year, the event brought in sponsorships, growing in size and scale. This spring, Locke, who works full-time in marketing at Dell, decided to take her initiative to the next level and formed a nonprofit with the slogan “never MS alone.”
Dedicated to raising money for research, the nonprofit also offers grants that offset some of the many costs of living with MS — be it medication, which can have monthly prices ranging from several hundred to tens of thousands of dollars, accessibility devices, transportation help and more.
“If you have accessibility issues, getting in and out of your home, getting in and out of your shower, I want you to be able to put a grant in requesting construction, and I’m going to get the materials. I’m going to get the contractor, and I’m going to take and hear your ideas with my contractor, and they’re just going to make it happen,” she said.
The nonprofit also strives to create a supportive community of people who know what it’s like to live with the disease and can lean on one another.
For Mike Mariano of Allenstown, this sense of camaraderie has proven invaluable.
“It’s very easy when you’re diagnosed with something like this to just give up. And the hardest part, originally, is to not give up and just still enjoy your life,” he said.
Mariano first met Locke at a Climb the Peak event and now serves on the nonprofit’s Board of Directors.
He handles sponsorships for the organization and takes time out of his busy life as a chef and a father to meet with companies about supporting the mission of Locke’s Promise and contributing to the grant program.
“This disease can bankrupt someone very easily,” he said.
Mariano knows firsthand how impactful receiving assistance can be. At one point, he was on a medication that cost $87,000 per dosage without insurance coverage. He wants to ensure others can receive grants that provide some financial relief.
“I’m 38-years-old, and I rely on forearm crutches and or a walker,” he said. “And walkers are expensive and they break down. People need walkers. People need wheelchairs. That’s stuff that’s out of pocket, stuff that insurances don’t usually cover.”
Insurance in itself is a concern people have to navigate, according to Dr. Ann Cabot, who specializes in treating MS patients and at the Elliott Hospital in Manchester.
“My fear is sometimes patients feel okay and they don’t get treated because they don’t have insurance, but inside, their disease is moving on. So they keep having silent brain lesions, they keep having MRI changes, and then they can’t compensate for it,” she said.
Cabot serves on the nonprofit’s board and has treated both Locke and Mariano. Now, Locke’s Promise is forging a philanthropic partnership with the Elliot Health System so that MS patients receiving care there can more easily get connected with resources — financial or otherwise — through the nonprofit.
With recent cuts to federal funding for research and Medicaid, the financial stakes of living with a lifelong disease has become even greater for some. Locke said she gets nervous every January when her insurance renews and the company evaluates whether they’ll keep paying for her medications or ask her to switch.
Mariano, too, finds himself worrying about insurance.
“When I do have to go on to disability, I’m definitely going to be very afraid of what kind of care I’ll be able to receive then. So I’m basically trying to work as long as I can,” he said.
‘Still a human being’
Locke has spent the past six years learning what her body needs and how give herself grace no matter how she feels.
‘We say, ‘We’re fine. We’re awesome.’ We smile through it, and we go through our day because we’re sick of saying, ‘I’m not okay.’ And nobody gets the level of fatigue that we have,” she said.
Mariano, who works in a hot kitchen, has to wear a cooling vest at work to prevent his body from overheating and shutting down. He walks with mobility supports and wears a leg brace. One of the biggest things he wants to impart to people is to not treat him — or anyone with MS — differently than how they’d treat others.
Inclusivity is not something people always understand, he said.
“Every MS patient out there is still a human being. We’re not these fragile little things that you should put in a bubble,” he said.
Locke has many beliefs that anchor her in the work she does and the life she leads. One of her core tenets, also the name of her podcast, is that “your story is your strength.”
“Nobody’s ever alone in what they’re doing,” she said. “You might think you’re alone, but tell your story. Reach out. Be vocal. And I know that’s hard to do sometimes. I’m not saying put it out on Facebook, like I do. I’m saying, find a group, and I want to be that group.”
In the past four years, her efforts have raised nearly $100,000. Her ultimate goal is to help bring about a cure for MS within her lifetime.
“Not everyone’s story is going to be mine, but I live my life through grit and determination, and that’s what I want,” Locke said.
For more information on Locke’s Promise, visit www.lockespromise.com. The organization’s next event will be Rides & Wranglers for MS on Sunday, September 21. In October, Locke’s memoir, titled “Living Out Loud,” will be released.
To learn more about multiple sclerosis, visit www.nationalmssociety.org.
This story has been updated to accurately reflect the date of Rides & Wranglers.