Over two thousand locals “took steps” to #Unlock ALS at the 24th annual Pittsburgh Walk to Defeat ALS® on August 27th . The event is expected to hit a fundraising goal of $420,000 for the ALS Association Western Pennsylvania Chapter which serves 31 counties and over 300 local families living with ALS. For the 5th year in a row, Hefren-Tillotson was the presenting sponsor.
Registration for the walk began promptly at 8am this past Saturday. WTAE’s Andrew Stockey emceed the event which began with a brief opening ceremony featuring Kim Fleming , CEO of Hefren Tillotson, Dr. Christi Kolarcik, Board President of The ALS Association Western PA Chapter, and Merritt Spier the Executive Director of the ALS Association Western Pa Chapter.
Tess Zajicek performed the national anthem before Jerry Rogers (a person living with ALS) cut the ribbon for the start of this year’s walk. ALS supporters walked along the river at Point State Park to the fountain for team photos and then back to the city side lawn for music by the band “Shades of June” and other festivities.
#UnlockALS was the theme and focus of this year’s walk as the Chapter and various sponsors worked diligently on creating an experience for participants to better understand a day in the life of a patient with ALS. Tobii Dynavox presented their speech generating devices to demonstrate how someone would communicate once they lost their ability to speak. PomptCare® emphasized the importance of a cough assist and a trilogy and Progressive Mobility presented their newest power wheelchairs available not only for show, but for ALS patients in attendance to use. The companies joined the likes of other organizations supporting ALS patients and ALS education such as: Interim HealthCare, Bayada and Three Rivers Adaptive Sports.
“We are extremely grateful for each of our devoted Walkers,” said Christi Kolarcik, Board President of The ALS Association Western PA Chapter. “This event and this day are so special; the Walk truly gives us the chance to come together as a community. We walk to honor and support loved ones currently living with the disease, and we walk in memory of those we have lost. Those that come to remember lost loved ones are the only “ALS survivors” because ALS is always fatal. The disease is progressive, and patients typically die within two to five years from diagnosis. The oftentimes rapid progression means that a person’s needs change quickly—one month a cane might be enough to help with walking and the next a wheelchair might be necessary. Our Association works to fill these needs and to share the financial burden that comes with caring for someone with ALS, estimated at around $250,000 per year. It is a devastating and debilitating disease, but the Walk serves as a reminder that every act, every donation, every sacrifice adds up in the fight to create a world without ALS.”
The funds raised from the walk will support cutting edge research and critical patient care to solve the mysteries of ALS, sometimes referred to as Lou Gehrig’s Disease. ALS has no known treatment or cure and military veterans are twice as likely to die from the disease.
Since the Ice Bucket Challenge the ALS Association has invested $77 million in global research and the Department of Defense has dedicated $7.5 million to study why veterans are twice as likely to develop the disease.
In the past year alone, donations to the Chapter have supported $218,800 for in-home professional and respite care, $10,637 worth of home modifications for wheelchair accessibility and over $79,000 for equipment such as speech generating devices and tools to help local patients live as independently as possible for as long as possible.
Every drop and every step adds up in the fight against ALS. The chapter and The ALS Association are dedicated to finishing what began in 2014 with the Ice Bucket Challenge. Each drop IN the bucket will someday fund and add up to a cure!
“It is incredibly heartwarming to see over 2,000 people gather together to honor those living with ALS and to memorialize those we’ve lost to this horrible disease. Our Chapter works so hard to put our patients and families first in everything that we do all throughout the year. So on this one day, we all come together as an ALS family and the tables are turned. All these wonderful, caring, generous people are there to support US and our services. It’s humbling and amazing,” said Merritt H. Spier, Executive Director of the ALS Association Western PA Chapter. “We thank everyone who came out on Saturday and everyone who is helping us reach our fundraising goal of $420,000. There’s still time to donate at www.cure4als.org. The walk site is open until the end of the year. And we look forward to next August when we will be celebrating our 25th Anniversary walk.”