When Christina Bober was diagnosed with multiple sclerosis in 2005, she knew her family would rally to support her. But she didn't realize that members of even her extended family would band together to fight MS on a regional level.
Nearly six years later, Team Chrissy, a nonprofit foundation aimed at easing the suffering of MS victims emotionally, medically and financially, was formally recognized as a 501(c)3 charitable organization.
The fledgling organization aims to be the first group in the area — for MS patients by MS patients — that helps where larger organizations can’t and insurance companies won’t.
Bober, now 28 and a pharmacist at MacNeal Hospital, is at times uneasy being the name and face of the organization, but she says she's getting used to it. Her story, which started with despair and continues with the daily struggles and indignities of the disease, has become one of quiet strength and a hope that she can help others cope with the debilitating effects of MS.
As a result of MS, Bober intermittently loses sensation in her legs. She falls a lot and has suffered countless bruises and several injuries that required stitches.
She currently uses a cane, and if the disease's progress is not stopped, she'll eventually be confined to a wheelchair.
Bober said she can't be at home by herself because if she falls, she may not be able to get up. She has to wake up earlier for work because everything just takes longer, and she's also had to give up “cute shoes” because she wears a brace on her left foot.
“You kind of take all those little things for granted until you don't have it and can't do it any more,” Bober said.
Despite her disadvantage, she hasn't let the disease get in her way.
Although she was in the hospital for weeks at a time, Bober finished her master’s degree at Midwestern University three years after her diagnosis. She's also taken on the Team Chrissy project and regularly blogs about her experiences with MS.
“If I stop, I'm afraid that I won't be able to walk and I won't be able to work,” she said. “The busier I keep myself, the less I think about the fact that I have MS.”
While Bober has suffered many losses at the hands of MS, it's also given her a resilience of spirit and a tenacity that keeps her going.
“Just because you have MS, doesn't mean you're broken,” Bober added. “You may have a good little bruise here and there, but you can still do what you want to do.”
Taking on the team
The Team Chrissy Board of Directors has 12 members, nine of which share the last name Bober. The other three are in the extended Bober family, while several reside in Riverside and the Chicagoland area.
Although the group is without question a family affair, it still abides by a strict set of bylaws. They've taken a crucial step in properly registering for 501(c)3 status, and are careful to ensure that every dime they collect will go directly to people in need.
“One of the hardest things we have to do as a group and as individuals is manage our own excitement and make sure that we're not putting the cart before the horse,” said Dan Rose, Christina's cousin and Team Chrissy's treasurer.
The group got its start and its name when the family started participating in charity walks for the National Multiple Sclerosis Society. The family realized that they were good at raising money for MS and donated more than $20,000 to larger advocacy groups before Team Chrissy was formed.
“We want to be able to help people and know where our dollars are going,” said Dan Bober, Christina's father and Team Chrissy chairman. “We felt that we'd be better served to be able to take donations and put it where we felt was needed in the Chicagoland area.”
Although no money from Team Chrissy will be used to treat Christina, the group’s mission is firmly rooted in members’ collective experience dealing with the disease.
The brace Christina wears on her left foot is designed for athletes recovering from surgery. As a result, the family's insurance company would not pay for the brace.
They've also had trouble getting their insurance company to pay for medications and are hoping to renovate their house to make Christina's daily life more manageable.
“My longterm goal is to be able to help people who I know are in the same boat that we were in,” Dan Bober said.
Right now, Team Chrissy is trying to build their finances with small fundraisers so it’ll be able to help people once outreach has began. Eventually, the group hopes to solicit major funding from corporations and bigger charities.
In the meantime, Christina Bober is happy to be so closely connected with her family and to try to help people dealing with a disease that has profoundly affected her own life.
“If it weren't for my family and the great support system I have around me, I wouldn't be where I am today,” she said. “I'm very lucky and I'm hoping to help other people and inspire other people to do the same thing.”
If you go
WHAT Team Chrissy’s first fundraiser
WHEN 7 to 10 p.m. May 21
WHERE Pioneer Lanes, 15610 S. Joliet Road, Plainfield
COST Tickets are $25 for a bowling pass and $15 for food only. The event features door prizes, raffles and a silent auction.
INFO Visit www.teamchrissy.org, email firstname.lastname@example.org or call (708) 790-1332.