BENEFITING: The Multiple System Atrophy Coalition
EVENT DATE: May 06, 2017
My Aunt, Sister Carol Ann Wilcox, of the Sisters of Saint Joseph in Erie, PA, was recently diagnosed with Multiple Systems Atrophy, or MSA. The effects of this debilitating disease have made it impossible for her to continue her work of service to others. On May 6th, 2017, I will be running the MMT100 Massanutten Mountain Trail 100 Mile Run to raise money for The MSA Coalition. (www.multiplesystematrophy.org). In this effort to help those who suffer from the same disease as my Aunt, I am inspired by her passion for service to help others in a way that she no longer can.
Sister Carol has been serving the community for most of her life, as a teacher, administrative assistant, pastoral minister, and director of religious education. In 2000, she co-founded the Sisters of St. Joseph Neighborhood Network SSJNN to meet the needs of impoverished residents of Erie, PA’s little Italy. At the time she worked out of her car going door to door and responding to the needs of the community. The first programs were a soup kitchen and tutoring for the youth of the community. SSJNN has since grown to serve the needs of residents across the core of Erie. To learn more about SSJNN visit www.ssjnn.org.
Besides her service to the community, she also loves to bring joy to others through her artwork. Sister Carol would share gifts of her beautiful watercolor flowers with friends and our family, which have brightened our homes. Unfortunately, she is no longer able to create art either. She is an inspiring figure to everyone in our family, and I’m sure, to everyone else she has met.
Multiple system atrophy, or MSA, is a rare, degenerative neurologic condition that affects both men and women, usually starting in the 50’s or early 60’s. MSA is considered a type of parkinsonism but with more widespread effects on the brain and body. The condition was first identified in 1962 and named Shy-Drager syndrome for two physicians who reported patients showing a combination of Parkinson-like movement disorders and problems with the autonomic, or body-regulating division of the nervous system.
Support, education, research and advocacy are important because MSA is so rare (affecting approximately 50,000 Americans) that few patients, prior to diagnosis and few physicians have any knowledge of the disease. Because of the rarity and severity of the disorder, patients, their caregivers and family members can feel isolated and confused about how to deal with the condition. Likewise, the medical profession may have difficulty in dealing with the diagnosis and treatment of this rare illness. People affected by Multiple System Atrophy need a support system to help them deal with the many issues.
The Multiple System Atrophy Coalition is a tax-exempt 501(c)3 charitable organization. All donations are gratefully accepted. As a volunteer run organization, The MSA Coalition administrative expenses are kept low. Seventy-five percent or more of all donations received goes to our dedicated MSA Research Fund. The remaining 25% is used to fund advocacy, educational, support and operational expenses. Donors also have the option to earmark 100% of their donation to research.
With taking on the challenge of running MMT100 in honor of my Aunt Carol, I am helping her to continue to serve others. The MMT is a challenging 100 mile trail ultra over a demanding, rocky course in the Massanutten Mountains of Virginia's Shenandoah Valley. The course includes short but rugged mountain climbs that total over 18,000 feet. Even though this will be an extremely difficult personal challenge, it still does not compare to the challenges faced every day by those that suffer with MSA.
My family is asking you to take on the challenge of supporting us in this effort, in the same spirit of service that Sister Carol has lived her life. Anything you can give would be gratefully appreciated.