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Stories from The ALS Association Greater Philadelphia Chapter
Episodes
Thursday Mar 09, 2017
Thursday Mar 09, 2017
The ALS Registry is a powerful tool to learn more about who has ALS in the United States and develop appropriate research proposals with different populations of people. In order for the Registry to work, people with ALS need to participate in a series of surveys. In this podcast, Jen Hjelle, the Executive Director of The ALS Association MN/ND/SD Chapter talks about their outreach to ALS families for the registry in more rural areas of the country and why they see the Registry as a valuable tool to end ALS.
Learn more about the fight against ALS, research, and participating in advocacy for initiatives like the Registry at www.alsa.org
Thursday Feb 09, 2017
Thursday Feb 09, 2017
In Part 3 of the ALS Research Podcast Series with Dr. Jill Yersak, we discuss the significance of biomarkers in understanding ALS progression and developing new treatments. Dr. Yersak answers questions on this topic such as:
What are biomarkers?
How does one identify a biomarker for ALS?
Why are biomarkers important for ALS research?
What is the future of this avenue of study?
Listen, subscribe, and learn more about biomarkers and other aspects of ALS research at www.alsa.org/research/
Thursday Feb 02, 2017
Thursday Feb 02, 2017
In 1977, The ALS Association Greater Philadelphia Chapter started with a promise to listen to people with ALS and create solutions to their every day needs while investing in research to end ALS for good. When Alisa Brownlee started with the Chapter in 1996, there were not many ways for the Chapter to do that listening except in face to face meetings. Since she began, the technology at the Chapter and nationally at The ALS Association, has grown by leaps and bounds to better assist ALS families while providing information and services faster than ever imagined.
In this Podcast, Alisa talks about how the Chapter went from only having one computer with internet access in 1996 to now communicating and serving ALS families through a multifunctional website, social media, video streaming, Telemedicine and more. Listen, share, subscribe and get involved today to continue #AdvancingTheMission at www.alsphiladelphia.org
Tuesday Jan 17, 2017
Tuesday Jan 17, 2017
One of the first commitments that The ALS Association Greater Philadelphia Chapter made to ALS families was to provide them with compassion and support through group meetings. Before the Chapter could develop the comprehensive care services taht it has today, it had to listen to the needs of those affected by ALS. That started with meetings at the homes of people like Ben and Dottie Ohrenstein.
In 2017, as part of the Chapter's 40th Anniversary, the Chapter is Honoring the Promise of those early groups and Advancing the Mission through more specialist resource groups in a wider geography. In this podcast, Alair Altiero, PhD., talks about the Chapter's Resource Group program and how it continues to evolve to fit the needs of ALS patients and caregivers. Listen, share, and get involved at www.alsphiladelphia.org
Wednesday Jan 11, 2017
Wednesday Jan 11, 2017
ALS is a difficult and complicated disease. Most people who are affected by ALS have not spent much time researching it until they or someone that they care for has been diagnosed. Everybody has questions, from the very general understanding of the disease to details about research, genetics, and more.
Dr. Jill Yersak, Manager of Research Communications at The ALS Association, is sharing her expertise in a running series on ALS research questions. In this Podcast, Dr. Yersak takes part in a conversation by answering the basic question - What is ALS?
Learn more about ALS, research, and Chapter services at www.alsa.org
Wednesday Nov 30, 2016
Wednesday Nov 30, 2016
ALS is a difficult and complicated disease. Most people who are affected by ALS have not spent much time researching it until they or someone that they care for has been diagnosed. Everybody has questions, from the very general understanding of the disease to details about research, genetics, and more.
Dr. Jill Yersak, Manager of Research Communications at The ALS Association, is sharing her expertise in a running series on ALS research questions. In this Podcast, Dr. Yersak takes part in a conversation by talking about What is ALS research?
Each year, people across the country and around the world donate to fund ALS research. In this podcast, Dr. Jill Yersak from The ALS Association helps answer the question - What is ALS Research? Why is it so complicated? What makes it take so long to complete?
Learn more about ALS, research, and Chapter services at www.alsa.org
Tuesday Nov 22, 2016
Tuesday Nov 22, 2016
Maureen Reid is a nurse at the ALS Treatment Center at Penn State Hershey Medical Center, where she supports patient families. She knows ALS all too well as she lost her husband to the disease, giving her even greater reason to provide compassionate care to those affected by the disease.
In this special Thanksgiving podcast, Maureen talks about her background in nursing, the high quality of staff at Hershey Medical Center, and the progress she sees for patient care. Listen, share, and learn more about ALS and how to get involved at www.alsphiladelphia.org
Thursday Nov 17, 2016
Thursday Nov 17, 2016
2016 marks the 20th anniversary of the ALS Association Treatment Center at Penn State Hershey Medical Center. One of the newer healthcare professionals at the clinic is Alair Altiero, PhD., who assists ALS families as the mental health clinician. Not only does Alair run the resource group at Hershey Medical Center, but she also oversees the group program for the entire Greater Philadelphia Chapter.
In this podcast, Alair talks about her role and what it means to be a part of a long standing professional ALS clinic. To learn more about the work at Hershey Medical Center and to get involved in the ALS cause, visit www.alsphiladelphia.org
Thursday Oct 20, 2016
Thursday Oct 20, 2016
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/
Wednesday Sep 14, 2016
Wednesday Sep 14, 2016
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.