Tony Heyl, Director of Communications and Public Policy, and Carla Patton, Manager of Special Events, discussed the mission of the ALS Association, to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. Their hope, to make it a ‘livable’ disease. A debilitating disease, ALS can take away a person’s ability to walk, use their hands, eat, and eventually breathe, people with ALS tend to live just 3-5 years from diagnosis, though some live longer.
ALS can strike anyone. Gender and race are not a factor, although women and underserved communities face barriers in diagnosis – a problem as quicker intervention can add time. ALS is a service connected disease and veterans are twice as likely to be diagnosed with ALS as the general population. As advocates, the ALS Association has worked to get those diagnosed their disability and support faster.
They spoke of the ALS Association Greater Philadelphia Chapter which serves 1,200 people with ALS in the eastern half of Pennsylvania, Central and Southern NJ, and all of Delaware. They fund vital research, supports 8 multidisciplinary treatment centers, and offers a wide range of services from support groups to in-home care assistance to wheelchairs, speech devices, and other critical tools to improve life for those living with ALS. They are also a navigation service, even helping with insurance questions such as when to borrow and when to purchase a chair through Medicaid.
Finally, we discussed their upcoming Monte Carlo night ‘All in For ALS’ Thursday, March 10th at The FUGE in Warminster, PA!
There will be gaming, plus music, food, an open bar with specialty cocktails and guests can explore the centrifuge used to train astronauts! Your winnings will allow you to compete for great auction items.
If you’re unable to attend in person, you can play remotely! Register for the All in for ALS online poker tournament, and you can still be part of the fun! Players will advance through rounds to secure a spot at the final table where the top three players will receive Visa Gift Cards.
To register, visit the events page at www.ALSphiladelphia.org and follow on social media @alsphiladelphia