Sam Watson combats the crippling cost of cancer for young adults

This post was originally published on this site

By Brian Klotz

Statistically speaking, Sam Eisenstein Watson ’01, MBA’06, shouldn’t be alive.

In 1999, just one semester short of obtaining her Brandeis undergraduate degree, Watson was diagnosed with Ewing Sarcoma, a rare form of bone cancer. After eight months of treatment, she returned to school, and one month before graduation suffered another setback: She was diagnosed with an early form of leukemia.

Not only did Watson survive her ordeal, but she has spent the past 15 years helping others in similar situations through her nonprofit, The Samfund, which to date has awarded about $2 million in grants to young adult cancer survivors to ease their financial burdens.

On September 28, Watson’s advocacy work with The Samfund, in partnership with the nonprofit Critical Mass, resulted in the text of the Deferment for Active Cancer Treatment Act being signed into law by the United States House of Representatives. “It was the single most gratifying moment for me personally and professionally,” says Watson. “And it was directly a result of my Brandeis experience.”

Free-falling

When Watson arrived at Brandeis as an undergraduate in 1996, she quickly found a welcoming social circle in the vibrant a cappella community on campus, joining a group called Spur of the Moment. “Within five minutes of being on campus, it felt like my home,” says Watson.

Sam reuniting and singing with Spur of the Moment classmates at The Samfund's 15th anniversary
Watson sings a tune with fellow Brandeis alumni from Spur of the Moment at The Samfund’s 15th anniversary event in May 2018. (Photo courtesy Sam Watson.)

She developed a special relationship with Professor of Sociology Shulamit Reinharz, MA’69, PhD’77. Later, when Watson was in the hospital for treatment, she received handwritten letters from Reinharz and her husband, then Brandeis President Jehuda Reinharz, PhD’72, H’11. “They genuinely cared about me, and that always stuck with me,” says Watson.

The winter before she was set to graduate, Watson had a bone scan to find the cause of nagging knee pain, but it revealed much more. On Christmas Eve 1999, she was diagnosed with Ewing Sarcoma, which is currently only found in about 200 children and young adults each year.

“I remember sitting on the floor and thinking about what was happening without really understanding what was happening,” Watson recalls. “I knew I would need chemo, but how could you possibly know what chemo is like before going through it? It felt like I was free-falling.”

Watson took time off from Brandeis to undergo eight months of treatment at Memorial Sloan Kettering Cancer Center in New York, where her mother had worked as an oncology nurse. She returned to campus the following year.

“Coming back was challenging in ways I didn’t anticipate,” Watson says. “I couldn’t be just another college student – I was bald and on crutches, and I caught every sickness.”

She recalls taking the class Sociology of Disability with Professor Marty Krauss, PhD’81. “It was the perfect class at the perfect time,” says Watson. “I was reconciling my own physical limitations and body image issues, and it helped me process in a very personal way.” Later, as a graduate student at Brandeis, Watson would come full circle by co-teaching the same course with Stephen Gulley, PhD’06, who had been a teaching assistant when Watson took the course.

One month before graduation, tragedy struck again. Watson was diagnosed with early stage leukemia, which would require a bone marrow transplant. “At that point, I knew one person who had a bone marrow transplant, and he died within six months,” she says.

Watson’s transplant was a success, however, and she spent a year in New York, having her blood cells counted on a daily basis at Sloan Kettering. Despite her circumstances, she considers herself fortunate, noting that she was always surrounded by family and friends.

“In the midst of a dark time, I had so much to be grateful for,” she says. “My support is the reason I’m here. In the last 15 years, I’ve seen so many people who struggle in profound ways because they don’t have that.”

She credits her alma mater for the concern it showed, as well as helping her navigate the logistics of her situation. “Peter Giumette, P’03, who was the dean of Student Financial Services at the time, helped to get my loans into deferment,” says Watson. “I never would’ve even known to ask for that.

“Everyone at Brandeis bent over backward for me, and at the time, I took it for granted that that was just what schools do. I’ve met so many people since then who have proven me wrong, and I’m even more grateful.”

Catching up

Returning to Massachusetts after her three-year fight with cancer, Watson felt like she had to play catch-up with her peers. “While all my friends were graduating, starting careers and getting apartments, I was in the hospital having surgery and chemo,” she says. “I had no real job experience. I wasn’t professionally equipped to do anything.”

As a young adult cancer survivor, she felt isolated. “In support groups, I was the youngest by far, and then I would go back to pediatrics for checkups and was the oldest by far,” Watson says.

Then there were the bills. Watson remembers receiving one for $274,000, triggering a two-year battle with the insurance company that her family eventually won. “I’m lucky my mom is an oncology nurse who knew exactly what to do, and that her employer let her go on leave to be my caregiver,” she says. “Without those things, I would’ve had a bill of almost $300,000 before turning 25.”

Wanting to help others in the same situation, Watson and a fellow Brandeisian intended to hold a music fundraiser and donate the proceeds to an organization designed to help young adult cancer survivors with their financial needs after treatment. “That’s when everyone forgets about you,” she says. “It’s very hard when you don’t look the part of a patient anymore.”

The only problem? They couldn’t find such an organization. Undaunted, Watson decided to create one, and The Samfund was born. It was admittedly an ambitious endeavor. “There are plenty of things I’m afraid of, but failing is not one of them,” she says.

Watson ringing the bell at NASDAQ with Samfund volunteers, board members and donors. (Photo by Christopher Galluzzo / Nasdaq)
Watson rings the Nasdaq stock market opening bell alongside Samfund volunteers, donors and board members on May 4, 2017. (Photo by Christopher Galluzzo / Nasdaq)

Launched in 2003, The Samfund awarded its first grants in 2005 to cover everyday expenses for young adult cancer survivors in categories such as rent and mortgage; health and wellness; transportation and even family-building. As the organization’s hashtag of choice notes, #CancerIsntFree.

After a few years, however, the complexities of managing the organization became evident. “My personal experience took me as far as it was going to,” says Watson. “It enabled me to understand the need and challenges, but my cancer story didn’t equip me to run a nonprofit.”

She returned to Brandeis, earning an MBA in the Nonprofit Management program at the Heller School for Social Policy and Management. “It seemed like the program was designed for me,” Watson says. “I was able to take what I learned in class, go home and directly apply it to The Samfund.”

Rallying

Watson recruited friend and Brandeis classmate Michelle (Zeitler) Landwehr ’01 to join The Samfund as chief operating officer. With a background in public health, Landwehr had been involved with the organization from the beginning as a volunteer. “Even after knowing Sam all these years, I am still in awe of how articulate, humble and driven she is,” says Landwehr. “My passion for this work and the cancer community began with Sam and her story but continued to grow as I got to know our grant recipients and their stories, challenges and successes.”

Further connections to Watson’s alma mater abound. The Samfund is aided in its endeavors by a robust Advisory Council and Board of Trustees, the latter of which includes Brandeis alumni Lex Friedman ’02 and Jeffrey Cooper ’77. Among the roster of The Samfund’s dedicated volunteers – “Sambassadors” – is another alumna, Allie Morse ’10, MS’17, who also speaks of Watson’s ability to inspire.

“I met Sam through the Brandeis alumni network shortly after my diagnosis with stage IV Hodgkin’s lymphoma just after my 23rd birthday,” says Morse. “I was feeling the particular loneliness of such a serious diagnosis at an age when most of my friends were moving on with graduate school or launching their careers, and connecting with Sam made all the difference. Her encouragement helped to give me a voice.”

Sam Watson with husband Adam Watson, Michelle Landwehr, Allie Morse, and Adam Marks.
Left to right: Adam Watson, MSF’11; Sam Eisenstein Watson ’01, MBA’06; Allie Morse ’10; Adam Marks ’00; and Michelle Landwehr ’01. (Photo courtesy Sam Watson.)

Beyond providing survivors with grants, information and resources, The Samfund has leveraged the raw data it compiles through its grant application process to become a thought leader in the field. In an article published in the peer-reviewed medical journal Cancer Medicine, The Samfund determined that young adults who had undergone cancer treatment were $100,000 behind their peers in average net worth. “We knew this anecdotally, but now we had the data to back it up,” says Watson.

The Samfund identified student loans as one of the largest causes of this gap and partnered with Critical Mass to advocate for the passage of the bipartisan Deferment for Active Cancer Treatment Act, introduced by Representatives Ed Perlmutter (D-CO) and Ileana Ros-Lehtinen (R-FL). The law allows cancer patients to defer student loan payments for six months without accruing interest. “We saw time and time again that young adults who had undergone cancer treatment would either go into forbearance and end up owing more than when they started, or default entirely,” Watson explains. “It’s one of the first bills you ignore because it doesn’t feel immediately threatening.

“I was fortunate that Brandeis was so supportive of me and made my transition so much easier logistically and financially,” she says. “Not everyone is so lucky, so getting this law passed for everyone to benefit from is the most meaningful thing I’ve done in my career.”

Reflecting

Today, Watson lives in Massachusetts with her husband, Adam Watson, MSF’11, and two children. Reflecting on her journey, Watson marvels at how far she’s come.

“When I was going through treatment and facing the uncertainty of a bone marrow transplant, I was pretty sure I wasn’t going to survive,” she recalls. ”For so long, I was focused on just staying alive. I didn’t let my brain think about what my life could actually look like in the future.

“Now, I have a career that I love and an adoring family, and I’m living an awesome life. I’m very, very lucky.”

Sam Watson and husband Adam with their two children at Gillette Stadium.
Watson with husband Adam and their two children. (Photo courtesy Sam Watson.)