Four years ago, when Marta Rode was first diagnosed with a rare Auto Immune disease, the Jasperite felt like she was all alone.
“You feel really isolated when you’re one in 40,000 people,” she said, referring to the number of people who are diagnosed with Wegener’s granulomatosis, a disease which affects the body’s organs and blood vessels.
As the 45-year-old began to research her condition, she discovered that although Wegener’s affected a relatively few number of people, the spectrum of auto immune disorders reached far and wide. Realizing she was no longer alone, Rode reached out to people in Jasper who suffered from other AI illnesses.
“One in five people are affected by auto immune diseases,” she said. “We need to unite as a group and show the world who it’s actually hitting.”
With that goal in mind—and driven by the thought that her daughter is genetically predisposed to an AI disease—Rode started the organization Find the Common Thread. The organization would strive to raise awareness, money and hope for a better quality of life for millions of people living with AI disease. Any progress made for a cure would also have implications for society at large, Rode reasoned.
“Auto Immune disease is the number one cause for chronic illness, which is the biggest drain on our health care systems,” she said. “Wouldn’t it be amazing to find the common thread and potentially cure all of these illnesses?”
Rode sees the efforts to raise money for diseases like Multiple Sclerosis and Rheumatoid Arthritis as valiant, but limited in scope.
“It’s like trying to cure a single tree rather than fixing the forest,” she said. "I feel with every cell in my body that the only way we're going to see a cure for any of these diseases in our lifetime is by working together."
Her efforts to bring sufferers together under the same banner has culminated in the annual Pajama Day on February 28, the same date as Rare Disease Day.
Since 2012, for an entire day, Jasperites have gone to work, to school and to play wearing their bedtime best. In 2014, Rode is hoping more people than in just Jasper will begin to understand that people with AI disease often can’t get out of bed in the morning.
“We want people in Edmonton and the surrounding communities to make PJ Day their own,” she said.
To help in that aim, the Find the Common Thread Foundation has put up two huge prizes for groups that raise the most money and link up the most social media hits on PJ Day, including a corporate pass from Marmot Basin.
Rode says the snowball effect couldn’t happen without the support of her community.
“I feel so lucky to live in Jasper. People are so supportive here. This is where we’re going to make it happen and make this movement go global.”
PJ Day will also include festivities at the Old Fire Hall, a pancake breakfast, a PJ street hockey tournament and activies at Marmot Basin. Stay tuned to Find the Common Thread's Facebook page for details.