Rare Disease Advocate and Celine Dion Fan Sheds Light on Stiff Person Syndrome

Moira Papp, a devoted wife and mother of three teenagers from Elmhurst, is a strong advocate for raising awareness about Stiff Person Syndrome (SPS), a rare autoimmune neurological disorder that affects her mobility.

Papp, who is constantly at risk of falling and relies on a walker, shared that the condition significantly slows down her daily activities, making simple tasks more time-consuming.

Aside from mobility challenges, Papp also experiences slurred speech as a result of the disorder, although her sense of humor remains intact.

When global music icon Celine Dion made a surprise appearance at the Grammy Awards on February 4, 2024, Papp was among those astonished by the revelation, noting that it was kept secret due to a possible last-minute cancellation.

Despite admiring Dion’s appearance, Papp expressed that certain members of the SPS community were concerned that Dion’s public image did not accurately convey the severity of the disease.

Alongside Dion’s Grammy appearance, news emerged of an upcoming documentary that delves into Celine Dion’s daily life with SPS, which Papp believes will play a vital role in educating the public about the condition.

Dr. Amanda Piquet, the Autoimmune Neurology Program Director at the University of Colorado, emphasized the importance of better defining and diagnosing SPS to advance research efforts and potential clinical trials.

Originally termed as ‘Stiff-man Syndrome’ in 1956, the disorder was later renamed to reflect its prevalence, particularly affecting more women than men.

Since being diagnosed in 2021, Papp has collaborated with The Stiff Person Syndrome Research Foundation to establish a patient registry aimed at converting data into valuable research opportunities.

Empowered by her experience, Papp established ‘Moira’s Mission,’ an organization dedicated to raising awareness about SPS, with an inaugural fundraiser scheduled to take place on March 3, 2024, at Stage 119 in Elmhurst.

The ‘A Fight to Find a Cure for SPS’ benefit and fundraiser, running from 12 p.m. to 5 p.m., aims to gather support and resources for the cause.

As Papp approaches her 56th birthday in March, she remains hopeful that with increased awareness and research, a cure for SPS can be achieved to improve the lives of individuals battling this rare condition.