Spotlight On: Young Adult Survivors United
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The creation of Young Adult Survivors United (YASU) is a story of an optimist and an age group lost and found.
The optimist is Stephanie Samolovitch, the founder and executive director of the Pittsburgh-based organization, who calls all young adults with cancer “survivors” from their day of diagnosis.
In 2005, about to turn 20 and start her junior year in college, Samolovitch suddenly faced life-threatening leukemia and what she found to be a healthcare system that fully addressed her medical needs but not her emotional and mental turmoil.
“No one talked to me, for example, about the risks of infertility from cancer treatments or about financial toxicity — the bills, lack of employment, the health insurance shortfalls that could throw not just me, but my parents into medical debt,” Samolovitch says.
The age group spans 18-to-39-year-olds with the disease. “I gradually realized that young adult cancer wasn’t considered a unique, age-linked experience, even though many of us aren’t fully established adults,” she says.
“We’re not established in our home lives, in thinking about a family, let alone creating one — especially if there are fertility issues,” she explained. “We’re not established in our work lives and careers. We’re not established financially or socially, including with those who may become partners or significant others.”
After earning an undergraduate and Master’s degree in social work, Samolovitch was able to translate these insights into action with her first job at Pittsburgh’s Cancer Caring Center (now Cancer Bridges): first as an intern, then as director of support services managing all programming and facilitators.
Given the opportunity to create a “passion project” she started hosting a monthly young adult (YA) cancer support group serving Western Pennsylvania. “These people needed a ‘safe space’ where they could share their stories, offer each other nonjudgmental support, and know that what was said in the room stayed in the room,” she says.
Between 2014 and 2019, the group grew in size (from about 25 people to some 150) and in the services provided to members. Samolovitch was planning monthly social outings — kayaking, bowling, game nights, and more — and, eventually, extending as much as $300 a year in financial assistance to individuals who applied for it.
In March 2020, Samolovitch says she was ready to establish Young Adult Survivors United (YASU), a national organization headquartered in Pittsburgh, based on her three pillars of young adult cancer support: mental health, financial, and social support.
Their Goal
“We want to do more and better in providing age- and stage-of-life appropriate programs — online and, hopefully, in person — at no cost for membership,” Samolovitch says.
She adds that YASU will continue emphasizing what people are still reluctant to discuss: the mental health of survivors and caregivers, along with that of their partners and significant others, who are their co-survivors.
Services They Provide
Any young adult, aged 18 to 39, in the United States who has been diagnosed with cancer — along with their caregivers and co-survivors — can register for a free membership with YASU on their website, which allows access to all of its services and programs.
This includes virtual support groups led by professionals or trained advocates, and an in-person grief support group for parents who have lost their YA child to cancer. The group meets monthly and is currently limited to the Pittsburgh area.
“We began right at the start of the COVID pandemic,” Samolovitch says. “So we still have a primarily virtual platform of support groups, educational videos, speaker programs, and counseling, along with what we hope is a growing roster of in-person events and social opportunities.”
The organization offers Rae of Hope, named after Raelene Lauer, who died at age 32 from breast cancer. The program carries on her legacy of enjoying small getaways and relaxing moments by arranging free daylong or overnight respite trips for members.
YASU also provides financial assistance grants — as much as $500 per person annually — to YA survivors who are registered members and live in a Southwest Pennsylvania county. YAs who live elsewhere in the United States should contact YASU to ask about funding that supports this program on a national level.
Events
Possibly Pittsburgh’s largest Halloween party, Wig Out is a ticketed entry event in which YA cancer survivors are honored during the Halloween weekend by everyone wearing wigs. “People without cancer learn first-hand what it feels like to wear a wig all day,” Samolovitch says. “At the same time, young adults seeing hundreds of people all wearing fabulous Halloween wigs kind of normalizes what these cancer survivors are going through in terms of their hair and the way they look.” It’s also a huge fundraiser, Samolovitch says, comprising an auction, live entertainment, and best wig contest.
Over Labor Day weekend, YASU hosts a YA Cancer Camp in partnership with Elephants and Tea, a magazine written by and for adolescent and young adult (AYA) patients, survivors, and caregivers. The YA Cancer Camp is a four-day, sleepaway-style retreat at YMCA Camp Kon-O-Kwee Spencer, north of Pittsburgh. YA patients, survivors, and their caregivers can socialize and pursue physical and nonphysical activities while resting, recharging, and enjoying a peaceful environment with peers who can relate to one another.
A $150 fee covers meals, snacks, linens, lodging, activities, and an airport bus. In honor of Farran Davis, who was on the Patient Advisory Committee for Elephants and Tea magazine–Steven G. Cancer Foundation, and who died of cutaneous lymphoma in 2021, YASU has joined Elephants and Tea in creating a scholarship fund for those in financial need who want to attend the camp.
Each summer, YASU hosts a Golf Outing fundraiser, a sold-out event in 2021, 2022, and 2023. Anyone can pay for a foursome to participate. There are also sponsorship and volunteer opportunities. Sign up information is on YASU’s Events page.
YASU offers socials, virtual (available nationally) and in-person (Pittsburgh area only), to give registered members a chance to have fun with peers, building lifelong bonds and friendships. Socials are offered once a month, and on different days and times.
YASU will be a charity of the Dick’s Sporting Goods Pittsburgh Marathon on May 5, 2024. Those interested in participating can “run for a reason” — fundraising for YASU. Runners and walkers will receive a YASU T-shirt and fundraising materials.
Core Belief
“Young adults with cancer form a unique community with needs particular to their age and stage of life,” Samolovitch says. “Empowerment. Inclusion. Community. That’s what they need.”
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