HSP and PLS Awareness Week to be kicked-off by the Spastic Paraplegia Foundation

  • Local support meeting held on July 20, 2019, Buffalo Grove, ILBack row: Left to right, Leena Amin, Frank Madrigali, Paulette Chiuppi, Carol Bagal, Bryan Caspersen, Tom Inman, Mary Ann Inman,Mary Levi, Teresa Flemming, Carol Clark, Barbra Caspersen, Front row: Sid Clark, Phyllis Madrigali and Shailen Amin

    Local support meeting held on July 20, 2019, Buffalo Grove, ILBack row: Left to right, Leena Amin, Frank Madrigali, Paulette Chiuppi, Carol Bagal, Bryan Caspersen, Tom Inman, Mary Ann Inman,Mary Levi, Teresa Flemming, Carol Clark, Barbra Caspersen, Front row: Sid Clark, Phyllis Madrigali and Shailen Amin Courtesy of Hank Chiuppi

 
Henry Chiuppi
Updated 8/13/2019 7:28 AM

The Spastic Paraplegia Foundation (SPF), North America's only non-profit dedicated to finding cures and treatments for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS), is pleased to announce the first ever HSP and PLS Awareness Week. This year's activities will be held Aug. 25-31, 2019.

The purpose of the National Spastic Paraplegia Awareness Week is to promote understanding of these rare disorders, create opportunities for mutual sharing and support, raise awareness of therapies for enhancing function, and support research to find their cures.

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The more people that know about these two conditions, the more they will understand that research into them will help all sufferers of all motor neuron diseases, including Parkinson's, MS, ALS, and, potentially, spinal cord injury.

As close cousins of ALS (aka, Lou Gehrig's disease), PLS and HSP are progressive neurological disorders. Those with HSP or PLS experience weakness and spasticity (a tightening of the muscles) in the hips and legs, making walking difficult. PLS also impacts the upper body including the ability to speak and swallow.

The most noticeable trait of these conditions is an inability to walk normally, making daily life a challenge. For people with PLS and HSP, it often requires the use of a wheelchair. Currently, there is no way to slow or reverse the progressive disabilities of these disorders.

During awareness week the SPF Board of Directors, as well as members of the HSP and PLS communities, will hold events to increase awareness for research.

                                                                                                                                                                                                                       
 

For more information please contact:

Spastic Paraplegia Foundation

877-773-4483 or sp-foundation.org

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