Karen Delaney Shideleff Ottsville, Pennsylvania
Karen Delaney Shideleff (Center) Surrounded By Loved Ones at the 2012 Hot Chocolate Event
Imagine losing a loved one to a neurodegenerative muscular disease that has no treatments or a cure. Imagine finding out you have been diagnosed with that same disease. Karen Delaney Shideleff experienced this when doctors told her she has ALS in February 2011. Delaney Shideleff’s mother, Lorraine, died from Lou Gehrig’s Disease 20 years ago, yet this disease has not lessened the 39 year-old nurse’s resolve to fight ALS.
In honor of her strength and courage, The ALS Association Greater Philadelphia Chapter is recognizing Delaney Shideleff and her family in May during ALS Awareness Month for the annual “ALS Across America” campaign.
The Association’s Communications Manager Tony Heyl calls Delaney Shideleff and her family “amazing spokespeople for fighting ALS.” She and her father Larry Delaney appeared on the Philadelphia television station PHL 17’s “In Focus” in early March 2011 to educate the community about ALS and its affect on families. Larry Delaney serves on the chapter’s Board of Trustees as its treasurer. During this segment, father and daughter discussed familial ALS, which is the inherited form of the disease that Delaney Shideleff has. Familial ALS affects 5 to 10% of those battling ALS.
The family also support spreading ALS Awareness and working with the chapter by attending chapter-related events including the Walk to Defeat ALSŪ in Philadelphia as well as the Phillies Phestival and ALS Express. Team “Delaney Strong” is one of the larger Walk teams at this annual event with 162 walkers. The Greater Philadelphia Walk to Defeat ALSŪ takes place this year on Saturday, November 5, where thousands of people with ALS, their families and supporters will help raise more than $500,000 for patient services and research. Last year, The Greater Philadelphia
Chapter walk program raised over $1.4 million in the fight against ALS. The highly anticipated Phillies Phestival takes place on July 26. Tickets go on sale June 11 and can be ordered by calling the Phillies office at (215) 463-1000. Last year’s Phillies Phestival raised more than $893,000.
“Karen, her dad and the rest of their family are ‘a constant face’ for our organization,” said Jim Pinciotti, Executive Director of The ALS Association Greater Philadelphia Chapter. “Karen lives with ALS, but she faces every day with a smile and does everything in her power to champion our cause.” To date, Delaney Shideleff has had trouble walking and now uses a cane.
Heyl said Delaney Shideleff plans to attend the annual National ALS Advocacy Day and Public Policy Conference in the nation’s capital along with staff and volunteers from the chapter.
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