Student leads campaign for autoimmune disease awareness

About 80 per­cent of Amer­i­cans can’t name one autoim­mune dis­ease, according to the Amer­ican Autoim­mune Related Dis­eases Asso­ci­a­tion. Lilly Stairs, AMD’15, is trying to change that.

The North­eastern senior launched the 50 cents for 50 mil­lion cam­paign with the mis­sion to spread the sto­ries of the mil­lions of people fighting autoim­mune dis­eases and to encourage people to donate 50 cents toward finding a cure. She serves as the campaign’s “chief immu­nity officer.”

The cause is a deeply per­sonal one for Stairs. During her second year at North­eastern, she was diag­nosed with two autoim­mune dis­eases: pso­ri­atic arthritis, which causes joint pain and inflam­ma­tion, and Crohn’s dis­ease, a chronic inflam­ma­tory con­di­tion of the gas­troin­testinal tract.

Despite this dev­as­tating news, Stairs knew she wanted to help others with autoim­mune dis­eases. “Yes, I had these ter­rible expe­ri­ences, but I feel blessed that I can now move for­ward with my life and be truly pas­sionate about the work that I am doing,” said Stairs, a fifth-​​year com­mu­ni­ca­tion studies major in the Col­lege of Arts, Media and Design.

Early on in her research she noted a clear lack of aware­ness about autoim­mune dis­eases, and the aware­ness ini­tia­tives she did find only focused on spe­cific diseases—such as Crohn’s, Celiac, and Lupus—rather than on autoim­mune dis­eases as a whole.

“Nobody talks about autoim­mune dis­eases,” Stairs said. “I hadn’t even heard of Crohn’s prior to my diag­nosis. We need to start thinking about autoim­mune dis­eases as an umbrella because if we do, people are going to start to under­stand the mag­ni­tude of it.”

Through the cam­paign Stairs and her team—which includes seven other North­eastern students—secured a spon­sor­ship with Scion, a sub­sidiary of Toyota. As part of the agree­ment, 50for50 was pro­vided with a car for two weeks that the team used to travel around the Boston area to meet with chil­dren with autoim­mune dis­eases and their families.

“It was def­i­nitely the most rewarding thing we have done,” Stairs said. “There are a lot of people out there looking for a voice and you can see their sense of relief when they talk to us.”

The cam­paign cul­mi­nates on Wednesday, which marks Boston’s inau­gural Autoim­mune Dis­ease Aware­ness Day. 50for50 will host a comedy show, “Laugh for Immu­nity,” at 7 p.m. at Laugh Boston, located in the city’s Sea­port Dis­trict. The cam­paign will also debut a new aware­ness video at the event, half the ticket sales for which will ben­efit the Amer­ican Autoim­mune Related Dis­eases Association.

Stairs noted that she hadn’t con­sid­ered entering the patient advo­cacy field before this expe­ri­ence, adding that she is incred­ibly grateful for all the oppor­tu­ni­ties she’s received at North­eastern to pursue this career plan.

She credits two North­eastern expe­ri­ences in par­tic­ular for preparing her to run 50for50: an advo­cacy writing service-​​learning course and her co-​​op at the Mass­a­chu­setts Biotech­nology Council, the state’s biotech­nology trade orga­ni­za­tion. On that co-​​op, she devel­oped a social media and web­site con­tent com­mu­ni­ca­tions plan for MassBio’s edu­ca­tion foun­da­tion, MassBioEd.

“The resources that I’ve had at North­eastern have been excep­tional,” said Stairs, who will be working at MassBio full time fol­lowing grad­u­a­tion this spring.