STAR, Idaho — What started as Idaho's first-ever Walk to End Lupus last year is growing into a statewide movement — and organizers say the community behind it is stronger than ever.
More than 100 people gathered at Freedom Park in Star last year for the inaugural event. Last year's walk raised nearly $11,000 in just three months. This year, organizers say they have already surpassed that total with donations still coming in.
Jean Wolford, director of Lupus Walk Idaho, has lived with lupus for more than 30 years. She was 22 when she was diagnosed, though her first symptoms appeared at age 12.
Wolford said the walk grew out of a personal mission to bring more support to Idahoans living with lupus, particularly those in rural areas.
"I have been working towards trying to get the people with lupus more support in Idaho; rural areas don't have the support," Wolford said.
When Wolford took the grassroots walk concept to the Lupus Foundation of America's corporate leadership in Washington, D.C., she learned just how significant the effort had been.
"I didn't learn until I went to DC with corporate LFA that it's actually a grassroots effort that's never been successful. So the team that I had last year and I were able to pull off something that nobody else in the US has done, and they've since carbon copied it for smaller cities," Wolford said.
This year, the walk is expanding with more community support and new sponsors. A man who reached out through the organization's social media pages after his wife was diagnosed with lupus ended up connecting his company to the walk as one of its first major foundation donations. The walk has also branched out to include more Boise-area companies alongside its Star community support.
Idaho also now has its own Lupus Foundation presence after previously operating under the Seattle chapter — a change Wolford said makes a meaningful difference for Idaho patients.
"I lobbied and fought and got our own Idaho website. So now when people go on, they see Idaho photos, they see Idaho teams, and they see Idaho," Wolford said.
The Idaho walk page can be found by clicking here. Donations can also be made there, or through the organization's Facebook.
This year's walk was also recently selected as the site where a major pharmaceutical company — LFA's number one national sponsor — will have a presence on the day of the event.
Wolford said the LFA has provided more support this year as well. Anyone who donates $500 or more will have their name printed on the back of the event shirt. The shirt design features a photo Wolford took at Freedom Park of the new bridge. T-shirts will also be available from LFA on the day of the walk.
The opening ceremony will include a flag ceremony by the American Heritage Girls, followed by a prayer and pledge of allegiance led by Fred Webb of the American Legion. The walk itself is approximately one mile and is ADA compliant, with a sidewalk route option that allows participants to turn around and come back, or a longer route through the riverwalk.
Wolford said signing up in advance is important for the walk's future.
"It's really important to give that information back to LFA to keep them sponsoring and supporting us as a little grassroots effort," Wolford said.
Lupus is an autoimmune disease in which the immune system attacks both good and bad cells. Wolford says there are three types of lupus, and an estimated 15,000 Idahoans are affected by the disease in some way. No two cases are the same, and symptoms can change day to day.
"We can go to bed feeling fine and not be able to get out of bed the next morning," Wolford said.
Lupus is also known as the great imitator — the only autoimmune disease with its own nickname — because its symptoms can mimic other conditions, making it notoriously difficult to diagnose.
"Usually for me, when I'm starting to get sick, it feels like the flu: low-grade fevers, aching, stuffiness, and I probably have to wait two days to even know if I'm in a flare or if I have the flu," Wolford said.
Wolford said research is also uncovering a direct correlation between lupus and EBV, the virus that causes mononucleosis, which may eventually lead to vaccines or earlier treatments — and is also advancing research for MS and other autoimmune conditions.
"They're getting close," Wolford said.
For those who know someone living with lupus, Wolford said the most important thing people can do is simple.
"The biggest thing is don't write them off and don't stop inviting them out. We may say no nine out of 10 times. But when the offers stopped coming, we feel... segregated, like we lost our team," Wolford said.
"Just never stopping those invitations, and that's the best thing that you can do," Wolford said.
Nampa neighbor Jailene Ruiz was diagnosed with lupus in December 2022 — though she said she believes she may have had it since childhood without knowing. Her path to diagnosis began when she was hospitalized for antiphospholipid antibody syndrome, a condition many lupus patients also have. The more she researched, the more her symptoms aligned with lupus, and she asked her doctor to test for it.
"The more I read about APS, the more I started to realize that my symptoms with lupus were aligning, and so I actually asked the doctor for that test. And yeah, my markers were, were through the charts and I for sure had it," Ruiz said.
Since her diagnosis, Ruiz has been hospitalized approximately 10 times. About two months ago, she was hospitalized for acute kidney injury, pneumonia, and sepsis. At the time, her kidneys were functioning at 11%, and doctors discussed installing a port for dialysis.
"I refused and I prayed. I cried. And I said I wasn't ready yet," Ruiz said.
Ruiz said dialysis felt like the end of the world to her, though she said her heart goes out to everyone who depends on it to survive. She asked for one more chance — and her kidney function went up 1%.
"I asked for my function to go up, and it did. It went up 1%, and it was all I needed. I fought too thin now and, and I'm home now and back to work," Ruiz said.
Ruiz said the experience changed her perspective.
"This last hospitalization stay really opened my eyes to appreciate everything around me, the little things, my family, my friends, my job, my health," Ruiz said.
She said she also grieves the life she had before her diagnosis.
"I do grieve my old life. I miss doing the things I used to do. I miss living carelessly as I used to. I love the sun. I love swimming. I love outdoorsy things, having lupus and not being able to be exposed to the sun or too much sun. It really dims you down," Ruiz said.
Ruiz said one of the hardest parts of living with lupus is having to constantly explain an illness that others cannot see.
"It feels like we're defending ourselves instead of just trying to explain ourselves," Ruiz said.
"They call it the invisible illness for a reason. You, even though we don't look sick, we are sick, we feel sick... we are fighting every single day just to feel okay," Ruiz said.
Ruiz said last year's walk gave her something she had been searching for.
"It made me feel seen. It made me feel not alone," Ruiz said.
"It made me realize that there are a lot of people out there like me, um, that are grieving their older life like me," Ruiz said.
Last year, Ruiz was surrounded by family and friends at the walk — her mom, siblings, aunts, cousins, best friend, and coworkers all showed up to support her. She said their presence throughout her illness has meant everything.
"They've been with me through every step of the way, every hospital visit, every, every sick, um, day at home. It's, it's been great," Ruiz said.
Ruiz added the walk's message is one she wants everyone to hear — whether they have lupus or not.
"When people tell you that they are in pain, believe them, and if you can, where everybody's welcome at the walk. You don't have to have lupus to walk, it's just everybody's gonna come together, and it's gonna be great," Ruiz said.
Both Wolford and Ruiz said events like this are about more than raising money — they are about reminding people living with lupus that they are not facing it alone.
"What we can ask from people is just love and support, you know, there's nothing you can do for lupus. You can't cure it. You just have to learn how to live with it," Ruiz said.
Ruiz said she hopes her story reaches others who are struggling.
"I just want people to know that are in my shoes that have been in my shoes, that they are not alone, they are seen, they are heard, and that's the whole point of this walk," Ruiz said.
The lupus community Wolford is building spans a wide range of ages and experiences — from people diagnosed as children to those who did not receive a diagnosis until their 60s. People from as far as Pocatello have reached out looking to connect.
Wolford said the community that has formed around the walk has been one of the most meaningful parts of the effort.
"I could not have done this without the team I had last year and the community," Wolford said.
"Everybody's been super open and super helpful to help us get this effort moving forward," Wolford said.
This year's Walk to End Lupus will take place Sept. 19 at Freedom Park in Star. Check-in begins at 8 a.m. with the opening ceremony starting at 9 a.m. To register, donate, or learn more, click here.
