Multitalented Sara Cooper has been a commercial real estate lender, an event planner and a marketing guru in her professional career. The founder of Cooper Creative Group has even mastered the culinary arts.
In recent times, however, she has found herself grieving over the loss of who she used to be. “I loved to entertain and set an exquisite table. I am a trained chef, and now I can’t lift a plate,” she says.
Cooper’s muscles are wasting away. In November, she was diagnosed with ALS, the progressive neurodegenerative disease. ALS, or amyotrophic lateral sclerosis, affects nerves in the brain and spinal cord. Over time, patients lose the ability to move, breathe or swallow. There is no cure.
“Your body gets tired at the end of the day. You’re tired because you’re trying to do the things you used to, but you can’t,” she says.
Yet Cooper, 56, is determined to make a difference. She views her diagnosis as an opportunity to spread awareness for ALS. She wants to develop a guide for people who are newly diagnosed with the disease, a map to help them navigate ALS’ many and confusing roads.
“There is a lot of information out there, and my hope is that I stay well enough to create a resource for newly diagnosed people to use,” the Titusville resident says.
In recognition of her many years of service in the community as a marketing consultant, as well as her bravery in the face of a difficult diagnosis, she received the 2019 Impact Award at the Princeton Mercer Regional Chamber of Commerce’s Women of Achievement Awards Breakfast on June 20.
“Sara is a very kind-hearted, giving person who is also a proactive professional,” says her neighbor and friend, Jodi O’Donnell-Ames. “She is doing her best as a member of the community to bring awareness to the disease.”
Cooper fell in 2016 while putting up Halloween decorations, breaking her left arm and right leg. She recovered almost 100 percent from those injuries thanks to months of physical therapy. She was in a wheelchair for four months.
Gianna Bigliani Cetkowski, of Fluid Physio in Lawrence, was one of the therapists who helped Cooper recover. Cooper recalls Cetkowski one day asking her if the October incident was the first time she had fallen, or if there had been any falls before that.
“I realized that during the course of the year 2016 I had probably fallen four or five times. But, you know, you say to yourself, ‘I’m rushing,’ or ‘I just stubbed my toe and that made me fall.’ If she hadn’t asked me that, I wouldn’t have thought about it. But when she did I was like, ‘Oh.’ Because a 54-year-old woman doesn’t usually fall four or five times a year.”
Cooper grew up in Ewing and Hopewell. She graduated from Princeton Day School and Boston University, where she earned a degree in finance. Her parents were both lawyers.
She had a good career going as a real estate lender, but started to question whether she was doing was her life’s work. She decided to go to the Cambridge School of Culinary Arts in Massachusetts to get trained as a professional chef.
“I changed my whole life to do that. I’d been a banker in Boston on a career track that was pretty good, but it wasn’t rocking my world,” she says.
Cooper and her husband, Mike Delehanty, left Boston to settle back in her hometown. There she and some business partners, including Beverly Mills of Hopewell, created Four Girls, an event-planning and catering company.
Later, she founded Cooper Creative Group, which she describes as a consortium that provides sophisticated marketing and branding solutions to small businesses and nonprofit organizations “who might not be able to afford an expensive agency.”
She describes her role with CCG as a sort of general contractor, putting clients in touch with experienced specialists who can help them with what they need, be that writing help, website development, graphic design or anything else.
After her diagnosis, she waited to share the news with family and friends as well as clients. She officially went public about having ALS on March 1, and says it was not too difficult to deliver the news — not as difficult it was for those receiving it.
“Once I went public, the support from our local communities, both personal and professional, has been tremendous. People I have never met before have asked if they can help,” she says.
She recalls being overwhelmed after being diagnosed. She had many questions, and few ideas of what to do or where to go get treatment. She depended on people she has gotten to know throughout her personal and professional life that she refers to as her “tribe.”
“I was initially shocked and very scared,” she says. “I was fortunate to have personal resources to help guide my through some of that.”
Now her friends and family are also helping her create a user-friendly plan for others who might not have such support, using her experiences and the information she has compiled as a guide.
Her oldest friend, Mary Jo Harris, her brother Albert Cooper IV and his wife, Mary Platt Cooper, have created a nonprofit corporation called Help For ALS in her honor. They established a GoFundMe page for Help For ALS that has raised $28,000 to date toward a goal of $100,000. One hundred and sixty people have contributed so far.
“The money is about making a difference and raising awareness,” Cooper says. “I am trying to utilize my experiences personally and all the other things that are out there so that its not this overwhelming thing.”
She says it is important for anyone with ALS to have a team along with a team quarterback. ALS is a “family community disease,” Cooper says. The caregiver’s piece is “huge.”
She also says it was important to learn from her friends and family, and especially her husband, that it is OK to ask for help when she needs it.
“Sometimes I feel like it’s six (o’clock), my husband and I are about to have dinner, and there is one more email, or I have one more thing I want to do, and I’m just too tired. That’s tough for me,” she says.
Cooper says Delehanty, a certified financial planner and principal with 21st Century Advisors in Titusville, has helped her get to a place where “it’s OK if the picture on the wall is crooked or the pumpkin wasn’t carved for Halloween.”
Cooper says they try to live each day together and to the fullest. “We look for things to feel good about as a couple,” she says.
Jodi O’Donnell-Ames is all too familiar with ALS and its effects on a person and a person’s loved ones. She lost her first husband, Kevin, to ALS, which eventually led her to form the nonprofit organization Hope Loves Company, which provides support to children and young adults who have a family member with ALS. Cooper has joined the board of directors.
“I’m trying to be a resource for her so that anything I’ve learned from my journey with ALS I can help her navigate what she’s going through,” O’Donnell-Ames says.
Another friend that Cooper relies on is Grace Harris, a nurse, whom Cooper describes as the captain of her health team. Harris and others give her injections of drugs like Radicava and Riluzole, which are designed to slow down the progression of nerve degeneration.
Cooper could give her the drugs themselves if she had the dexterity to do so, but she does not. O’Donnell-Ames has also learned how to give her these injections.
“It’s just a lot to deal with not being able to do things for yourself,” Cooper says. “When people treat you with dignity and care and you feel like they have your back and you have fun with them — this is what my life is, so I just try to make the best of it.”
According to the ALS Association, the average life expectancy from time of diagnosis for an ALS patient is two to five years. Approximately 5,000 people in the U.S. are diagnosed each year.
Cooper says she frequently receives letters and cards. She recalls one letter from a woman she knows that moved her to tears.
“I wasn’t crying because I have ALS, I was crying because of her kindness…the love and support that I receive is more humbling than the diagnosis,” she says. “That’s the way people love me. It’s bigger than my family. Sometimes bad stuff happens and you work around it.”
She reflects on how she is unable to write the handwritten notes she is known for and laments that she has a collection of beautiful stationery that is going unused.
“Am I going to be sad? Yeah. But I’m going to figure out a way. I can get a couple of friends that have some time, and they’ll write my thank you notes,” she says. “So I’m a problem solver. It doesn’t make me happy that I can’t do it, but I’ve got to accept it because it is not going to change.”
Although she is battling the disease, Cooper says she continues to be as involved as before with Cooper Creative Group. “I do have a new client that is taking a lot of my time, and that is Sara Cooper’s ALS,” she says.
Cooper hopes that by sharing her story, she can help open up the conversation surrounding the difficult topic.
“I’m determined to make a difference, not for Sara Cooper, but for the ALS population. If I make a difference for one person who feels they can talk openly about ALS and taboo subjects, then I am happy,” she says.
Sara Cooper was honored by the Princeton Regional Chamber of Commerce on June 20 at TPC Jasna Polana when the chamber held its Women of Achievement Awards Breakfast. Jodi O’Donnell-Ames was also honored at the breakfast for her work with Hope Loves Company.
Also honored were Susan Michel of Glen Eagle Advisors LLC, Jigna Rao of Mercer County Community College, and Cynthia Ricker of Bryn Mawr Trust.
Help For ALS GoFundMe page: gofundme.com/f/uu3vm-help-for-als.