Transforming Lives

Writing  by Emily Meehan and Clare McAlpine

When you walk up to the doors of Friends of Karen headquarters in North Salem, the first thing you might notice is their walkway – a “path of compassion” filled with several hundred dedicated bricks featuring loving messages and tributes from supporters. It demonstrates how this local organization has changed the lives of thousands by providing customized support for over 550 sick children and their families annually.

Friends of Karen began in 1978 by Sheila Petersen, a friend of the MacInnes family whose 16-year-old daughter Karen was suffering from a rare genetic disorder. 

“Karen knew she wasn’t going to survive,” says Judy Factor, the organization’s executive director. “She wanted to come home and live with her family. She’d been in the hospital for months and months, and there was nowhere for her to go – there was nothing for kids. Her parents would have had to sell their house to afford the 24/7 care their daughter needed, and Sheila didn’t think that was fair.”

Petersen rallied the support of their local community and raised enough money to bring Karen home so she could live out the remaining 11 months of her life with her family. Following her successful fundraising, the MacInnes family requested that Petersen continue her efforts and help more children and families find support in their time of need. Petersen obliged, and people began bringing her stories of other families and children they knew or had learned about from news articles. 

Today, the compassionate endeavor of one woman has turned into a non-profit that provides emotional, financial and advocacy support for children with life-threatening illnesses and their families. 

Building a legacy 

For decades, Friends of Karen operated out of Petersen’s home. 

“She had a really compassionate heart,” says Factor. “It was a homegrown organization filled with good people who wanted to help. She started in her kitchen, and she put an ad in the local newspaper looking for volunteers to help her stuff envelopes. Her neighbors often sat around her dining table, helping her do the mailings.”

As Peterson honored the MacInnes family’s request and began to help others in similar situations, she wasn’t sure what would come of it. 

“Sheila always said she provided families with more time to love,” Factor explains. “When a child is sick, it hits a family hard – their bills skyrocket, and a parent might have to quit their job to care for their child. Then they can’t afford to pay their rent or buy food for their family. Sheila wanted to provide families with a safety net. She wanted to make sure the family was stable so they could care for their critically ill child.”

While there are many organizations that help kids with cancer, Petersen set out to help all kids with a critical illness. Whether it was cancer, a heart or lung transplant, an autoimmune disease or any other potentially life-threatening illness, Friends of Karen helped in whatever way the family needed. As medical care advanced and new treatments helped children survive, Friends of Karen grew to help families who needed support after their child recovered. 

“Some children experience residual difficulties due to the illness or treatment,” Factor explains. “They might have learning disabilities, dental problems from chemotherapy or other long-term consequences. We’re there to help families during this time, too.”

And, as time went on and situations and families’ needs changed, the organization changed. 

“Sheila originally thought Friends of Karen would be an organization full of volunteers, but eventually she had to hire employees,” Factor says. “Her first paid employee was a bookkeeper, and her next employee was Susan Downs, who was brought on in 1987 or 1988 as the first full-time social worker.”

Petersen died in a car accident in 1990, when she was 52 years old. But Friends of Karen continued, and five years later, the organization purchased a home on Titicus Road in North Salem to serve as their headquarters. Built in the 1800s, the organization immediately added an extension to the home to accommodate their growing staff.  

To the naked eye, their headquarters still looks like a traditional home, which Factor says represents the organization’s focus on keeping families safe in their home during a difficult time. But inside, the walls are adorned with photographs of children they’ve supported and artwork made by their siblings. Bedrooms are now offices, and there’s an entire volunteer room “always filled with people who provide all kinds of support and assistance,” says Factor. But even with the addition, Factor says they are now “bursting at the seams.”

Providing tri-state (and beyond) support 

Today, Friends of Karen helps children and families throughout the tri-state area, including Westchester, Long Island, New York’s five boroughs, southern Connecticut and northern New Jersey. Twenty-two years ago, they opened a satellite office in Melville, Long Island, and they’ve had a presence in Manhattan for the last 16 years. The organization now has more than 300 volunteers, 19 full-time employees and 10 part-time employees.

“One of the things that distinguishes Friends and Karen is that we work with families in their home or in the hospital,” Factor says. “But during COVID-19, we started offering support online. It was one of the turning points for us in some ways because we never stopped, and people participated from all over the world. We had only done that to a very small extent before the pandemic, but COVID was a creative time for us. In a way, it was a mixed blessing.” 

They’ve now helped around 18,000 sick children and their siblings, and this year, their budget is $4.6 million, which Factor says is “the highest our budget has ever been, but it’s not enough.” So, they partner with other organizations and look for other resources so they can continue Petersen’s mission of creating a safety net for each family.

Founder Sheila Petersen (left). Karen MacInnes, for whom Friends of Karen is named (right).

From bike rides to galas

With such tremendous growth over the years, the organization has held a variety of fundraisers. When Petersen raised money for Karen, she raised a total of $35,000 in six weeks to pay for Karen’s around-the-clock care. But today, Friends of Karen raises over $1 million a year just from their special events. 

“We do all kinds of things, like bike rides and walks,” Gwen Salmo, the special events coordinator, explains. “Local restaurants help out as well. Momma Rosa in Somers hosts a dinner every year for us and gives us the proceeds; they are Friends of Karen family. We’ve also done golf outings, trivia nights and ice cream trucks. But one of the primary ways we raise money is through our special events.”

For the last 19 years, they’ve held a Journey of Heart bike tour that covers 80 to 100 miles over a two-day period. There’s also an annual 5K walk called Adina’s Angels that began six years ago. But their biggest event is their New York City gala, which was held on November 3. The formal event, which took place at Guastavinos, serves as a fundraiser and a celebration, allowing the organization to spread the love and appreciation for all who support them and who they support right back.

Making an impact

“We’ve never turned a family away,” says Salmo. “These families that need us, they really need us, and we’re there to help. We’re there when the child is diagnosed through the whole illness. And we’re there even after the child gets better. Or if, God forbid, the child passes away, we’re there by the parent’s side.”

And what a child or family needs can vary from one to the next. 

“We don’t have a set range or limit for support,” Salmo explains. “Each family’s needs are very different. Once the family applies for support, our social workers sit down with the family to figure out their exact needs, such as help with rent, transportation, food, medical and prescription co-pays.”

Today, they can provide social workers in English and Spanish, and they use an interpretation service if they don’t have someone who speaks the family’s language. 

In 2009, Friends of Karen began a sibling support program because they noticed that siblings of the sick child also struggled with changes to their daily routines and family stress. Now, siblings can receive therapeutic support from licensed creative art therapists and certified child life specialists. And still, it’s all based on Petersen’s goal of supporting the whole family with whatever they need.

“She didn’t have this great idea about starting an organization,” says Factor. “She was just being a kind person. That’s the beauty of it. She was just a good, kind person who wanted to help her neighbors. And because of her work, she was profiled in Reader’s Digest and she was on the Today Show; she was a hero. She was one of those people that everybody admired because of the great things she had done.”

This article was published in the November/December 2023 print edition of Connect to Northern Westchester. 

WAYS TO HELP

Here are some ways you can help Friends of Karen: 

• Host a fundraiser yourself, such as a car wash, bingo night, bake or tag sale, trivia night, etc.
• Donate supermarket gift cards (Factor says they are in “desperate need” of these).
• Provide new/unused toys, books and games for children of all ages.
• Participate in their holiday adopt-a-family program with a curated wish list.
• Volunteer in person to wrap birthday presents, pack up gifts & wrapping paper, backpacks for school, etc. 
• Buy or donate school supplies through their back-to-school program (begins every July).
• Donate your time and your skills, ranging from writing to gardening to tech support.