When the Leukemia and Lymphoma Society reached out to Wilton resident Matt Kowal about volunteering, it was because officials there thought his pharmaceutical industry job would make him a good fit for fundraising and professional connections. Little did they — or even Matt himself — realize just how personally meaningful that request would be.
“They reached out on Linked In and asked if I wanted to be on the executive committee. They try to recruit someone that works for an oncology pharmaceutical company, but I worked for one that develops drugs for liver disease,” he recounted. But it was a timely request nonetheless, as Matt was about to mark the one-year anniversary of his father passing away from leukemia.
“As I was getting closer to the anniversary I was thinking about what could I do to try to remember my dad and give back a little bit. So it was a bit of serendipitous contact,” Matt explained.
From his own professional experience in pharmaceutical marketing, Matt was familiar with what organizations like LLS do for patients. He also knew the value brought by pharmaceutical companies that partner with LLS to funding the LLS foundation to benefit leukemia and blood cancer patients.
Witnessing his father’s experience informed why Matt has become a dedicated LLS supporter, working hard on the organization’s upcoming annual fundraiser, Light the Night, which takes place virtually on Nov. 4.
“My dad was diagnosed with acute myeloid leukemia (AML) in December of 2019, and he passed away March 4, 2020. He was diagnosed the second week of December, and as he was driving home, he just had this horrendous nose bleed that wouldn’t stop. And by New Year’s, he was in the hospital starting his treatment. It just happened so fast that he didn’t even have a chance to go and get help from LLS. By Jan. 25, it was already heading severely downhill. He didn’t have a chance to benefit at all,” Matt said.
What the Leukemia and Lymphoma Society Does
With its national headquarters in Rye Brook, NY, the Leukemia and Lymphoma Society serves many different functions, according to Michelle Fanwick, an LLS campaign development manager who also lives in Wilton.
- Information Resource: The LLS Information Referral Center provides resources for newly diagnosed patients, including information, education physician referrals.
- Clinical Trials: The LLS Clinical Trial Center helps people for whom traditional treatment hasn’t worked. Ten oncology nurses work to identify appropriate clinical trials and help get patients enrolled.
- Research Funding: The LLS has provided research grants to fund blood cancer research to the tune of $1.3 billion since it was founded in 1949.
- Financial Assistance: LLS provides direct financial assistance to blood cancer patients who need help affording their insurance premiums, healthcare cost-sharing or treatment-related travel expenses, or other one-time major expenses.
- Support Systems: Support groups including the “First Connection Program” to connect new patients to other people in similar demographics who have had the same disease, and “Family Support Groups.”
- In-School Training: to provide continuing education to teachers and other school staff about how to work with children diagnosed with blood cancers.
- Educational Resources: Online education, printed materials, podcasts and conferences are some of the ways the LLS educates the public about blood cancers.
The LLS Light the Night Walk is an annual fundraiser held every fall in cities and towns across the country, to raise money in support of all of the LLS efforts as well as to celebrate, remember, and honor those touched by blood cancer. Participants join together for a walk carrying illuminated lanterns to take steps to end cancer – white lamps for survivors, red for supporters, and gold in memory of loved ones lost to cancer.
Typically the local event would be held in Norwalk at Calf Pasture Beach, and while walks are being conducted in-person in some areas, the local Westchester-Fairfield combined event will be virtual this Nov. 4 due to COVID.
“We did not feel it was in anyone’s best interest currently to have an in-person event, because we would have had to exclude children under 12, and what do you do about people who aren’t vaccinated? And our number one job is to keep survivors and patients and their families healthy,” Michelle explained. “We did not want to be a super-spreader event.”
The online event will feature survivors talking about their experiences, virtual “lantern holders”, a virtual children’s corner, a photo booth, a remembrance tent to leave notes to memorialize and honor loved ones who have been lost to blood cancers, and more.
Losing His Dad Motivated Involvement
Thinking about what his own father went through and how much of a difference the LLS might have made inspired Matt to accept the request from the LLS to get more involved.
“Right around the first year anniversary, it hit me hard. And getting the call, I said, maybe I should try to do this, you know? It’s a really worthy cause. There are a lot of patients out there and, importantly, there are family and caregivers who have no idea what these diseases are about. Blood cancers are typically more lethal than solid tumor cancers. The fatality rate is typically higher in general and the disease itself typically moves a lot faster than it does in solid tumors. It’s even more important for these patients to get the help that they can as quickly as possible. These organizations are underfunded in general for what they’re being asked to do in general,” he said.
The impact, Matt believes, is wide-ranging, and it’s why he hopes other people will be motivated to help — either with their skills or by donating.
“Once you start talking about cancer, you find pretty much everybody has somebody that they know, whether it’s a family member or somebody else, that has or has had cancer. There’s a lot of flexibility for what people can do and how they can contribute … But at the end of the day, obviously the funding is what makes everything happen,” Matt said.
He’s disappointed the event can’t be in-person, knowing how much personal connections and contact can help in the cancer fight.
“When my dad was really sick, I almost didn’t get a chance to see him during his last days, because it was right around the end of February, beginning of March when COVID was really starting to hit. I remember going to LaGuardia to fly to Chicago for the funeral, and that was one of the last flights before COVID hit,” Matt said.
But COVID hasn’t only restricted participants attending this year’s Light the Night; it’s also hurt the amount of money the LLS has been able to raise this year.
“Our goal is $230,000. I’m embarrassed to say we’re at 35%. We have a long way to go. It’s a tough, tough year. Sponsorships have pulled back, pharmaceutical company funding has dropped significantly,” Michelle noted, adding, “Cancer, doesn’t take a break for COVID.”
That thought makes Matt get emotional.
“When I think about what the LLS is trying to do for all these other patients that are still alive and still could benefit from it… I don’t think that my dad getting involved with the LLS would have saved him per se, but maybe it could have made things a little bit easier and maybe would have helped him a little bit more before he went away, because I was his only advocate,” he recalled.
Being part of Light the Night’s executive committee has helped channel that desire to do something concrete to help others in the blood cancer fight. “I just think that it’s something that hits close to home. Anything I can do to try and raise awareness and some funding is important,” Matt said.
Anyone interested in participating, forming a team, or making a donation for the Fairfield County Light the Night can visit the online event page. To support Matt’s efforts, visit his online team page. For more information on the Leukemia and Lymphoma Society, contact Michelle Fanwick by email or by calling 203.434.6579.