“It was heartwarming to see the outpouring of support from everyone who came out to stand with those battling PSP during this weekend’s walk in Chantilly,” said Congresswoman Jennifer Wexton. “I’m so grateful to the Ream and Batwinis families for their outstanding efforts to make this march possible, and to CurePSP for their relentless work to one day help find a cure for this terrible disease. As my family and I face the challenging road ahead that comes with this diagnosis, we’re comforted to know we have such a fierce, supportive community around us.”
The march, which took place at Sully Historic Site in Chantilly, raised funds for CurePSP in support of its mission to improve existing treatments for PSP and eventually find a cure. It also honored Jane Batwinis, who is currently battling the disease after being diagnosed with it in 2019 and Mary Kay Ream, who passed away from the disease this past August. Representatives for the families affected by PSP, as well as Kristophe Diaz, the Executive Director of CurePSP, spoke during a brief program prior to the walk thanking the hundreds in the crowd for raising a record more than $40,000.
According to the National Institutes of Health (NIH), Progressive Supranuclear Palsy is a rare neurological disorder that affects body movements, walking and balance, and eye movements. It is one of a family of neurological conditions called atypical parkinsonism and belongs to the category of frontotemporal disorders.
PSP is often misdiagnosed as Parkinson’s Disease, as Congresswoman Wexton was during the early stages of her treatment. Symptoms are often similar, however PSP usually progresses more rapidly than Parkinson’s. There is currently no treatment that effectively stops or slows the progression of PSP, and symptoms usually do not respond well to medications. The PSP-P variant in particular, however, may respond better to antiparkinsonian medications than other types of PSP, at least for some time.
More information about CurePSP and their work can be found on their website here.
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