Moira Papp, a resident of Elmhurst and a mother of three teenagers, bravely sheds light on her experience living with Stiff Person Syndrome (SPS), a rare chronic autoimmune neurological disorder that she shares with global icon Celine Dion. Despite the challenges posed by SPS, Papp remains determined to raise awareness and find a cure for this debilitating condition.
Impact of Stiff Person Syndrome
For Papp, SPS significantly affects her mobility, rendering her a fall risk and necessitating the use of a walker around the clock. Simple tasks take triple the usual time due to the limitations imposed by the disorder. Additionally, Papp grapples with slurred speech, a symptom stemming from the neurological nature of SPS. Despite these hurdles, Papp maintains her sense of humor, referring to her slurred speech as a “gift” bestowed by the condition.
Celine Dion’s Revelation Sparks Conversation
The revelation of Celine Dion’s battle with SPS during her appearance at the Grammy Awards on February 4, 2024, sparked widespread awareness and discussion within the SPS community. While Papp admired Dion’s resilience, she also expressed concerns that Dion’s public appearance may not fully reflect the severity of the disease, which often remains invisible to onlookers.
Advocacy and Research Efforts
In light of increased awareness, Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado, emphasizes the importance of defining and diagnosing SPS more accurately. Papp, diagnosed with SPS in 2021, actively collaborates with The Stiff Person Syndrome Research Foundation to establish a patient registry aimed at transforming data into meaningful research. Despite the challenges, Papp remains optimistic about the prospect of finding a cure for SPS, underscoring the need for continued research and advocacy efforts.
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“Moira’s Mission” Raises Awareness
Papp’s dedication to raising awareness is exemplified through her initiative, “Moira’s Mission.” The organization aims to shed light on SPS and its impact while advocating for research and ultimately, a cure. As part of their efforts, “Moira’s Mission” is organizing the inaugural fundraiser event, “A Fight to Find a Cure for SPS,” scheduled for March 3, 2024, at Stage 119 in Elmhurst. This event serves as a platform to unite the community in support of individuals living with SPS and to advance research endeavors aimed at combating this rare disease.
Conclusion
Moira Papp’s journey with Stiff Person Syndrome mirrors the challenges faced by many individuals battling rare diseases. Through her advocacy efforts and determination, Papp seeks to raise awareness, drive research initiatives, and ultimately find a cure for SPS. As the community rallies behind “Moira’s Mission” and similar endeavors, there is hope for improved understanding, support, and progress in combating rare neurological disorders like SPS.