In this Podcast, Chapter social worker Melissa Coll talks about the National ALS Registry through the Centers for Disease Control. The Registry helps guide knowledge of ALS and help researchers understand the numbers of who has the disease so that they can move on other important projects. Melissa here talks about the value of the Registry, how it empowers people with ALS, and why continued advocacy is important. Listen, share, and learn more about the Registry at www.alsa.org or www.alsphiladelphia.org or directly at https://wwwn.cdc.gov/als/
Each year, Ann Malloy and her family walk in the Greater Philadelphia Walk to Defeat ALS in memory of their father, Pat Malloy. They come together as part of team Pat's Posse. Now Ann is walking not just with her father in mind, but also her brother Patrick, who was diagnosed with ALS. In this podcast, Ann talks about what the walk means to her, how the team prepares, and why they find the Walk to Defeat ALS to be so positive and reaffirming year after year.
Long time Greater Philadelphia Chapter volunteer Larry Kaplan has embarked on an ambitious program to travel to every state in the country for the 50 in 30 Challenge - a campaign to do a unique bucket challenge in each state to raise money and awareness for the ALS cause. In this podcast, Jamey Piggott, an events manager with the Chapter, talks about how he joined Larry on the road for a week, seeing 16 states in 8 days to help him meet people from Ohio to Kansas and many places in between. Find videos and donate online at www.50in30.org today and learn more at www.alsphiladelphia.org
Chrissie Delaney Cohen lost her mother to ALS and her sister has lived with ALS for over 5 years. Recently, she travelled to the University of Miami to participate in ALS research studies to help understand the genetics of families affected by ALS. In this podcast, she talks about how she got involved in the program, what it entailed, and why others should search for more ALS studies for themselves. Learn more about ALS and how to get involved at www.alsphiladelphia.org
When Shelbie Oppenheimer was diagnosed with ALS in the 1990's, she and her husband Jeff quickly became a team united to find an end to the disease. Together they raised a wonderful daughter, get involved with ALS Association events, worked with the Phillies, and advocated on Capitol Hill in front of national lawmakers. Shelbie passed away from ALS after a long battle and Jeff continues to be a strong advocate and supporter. Listen to Jeff's perspective on this journey with ALS and then find more ways to get involved at www.alsphiladelphia.org
Wes Rose has been living with ALS for over 10 years. As a father, husband, advocate, and board member with The ALS Association Greater Philadelphia Chapter, Wes has fought ALS from all angles. In this podcast, Wes joins the discussion from his office at Arcadia University to talk about the support of the Philadelphia Phillies, his organizing efforts for Team Rose Pedals in the Ride to Defeat ALS, and how young people like his sons and their friends such as JD Florio, are next generation leaders to end ALS. Listen and support the ride at www.als-express.org
Matt Doroshow and the students at Colonial Middle School in Montgomery County, PA have run the extremely successful 4 on 4 for a Cure Basketball Tournament for the last few years to raise money for ALS research. In this podcast, Matt and two students in the Hoops for Hope Committee, MacKenzie and Charley, talk about organizing for the event and the excitement of bring people together for a good cause. They are so good at putting together this event that this year, it raised over $18,000!
Dale Miller has had a remarkable career in the United States Marines. In this podcast, Dale talks about how he began developing symptoms of ALS while serving in the military, the care he receives through the VA and The ALS Association, his work in ALS advocacy, and the strong help from the Philadelphia Phillies.
Often when we discuss ALS and other serious diseases, we use words like hero and brave to describe those who are most affected. However, is that how people with ALS want to be described? In this podcast, John Russo talks about his life with ALS and about the words he likes and dislikes, how people can offer to help in person, and why the best way for people to be a friend to someone with a disease is to not wait until they need a friend, but to start now, before ALS or something like it enters the pictures.
When the ALS Association Greater Philadelphia Chapter created a t-shirt design contest, many people offered some great ideas. John Crawford created a winning design called CURE ALS based off the Love Park statue in Philadelphia. In this Podcast, John talks about his father's battle with ALS, enjoying the Phillies World Series win together, and how he hopes his shirt design will bring more awareness to ALS and the services and research through The ALS Association. Purchase your CURE ALS shirt at https://www.booster.com/alsphilly today