ALS Podcast: Recent Episodes
ALS Philadelphia
Jessie Meier is a social worker at The ALS Association Recognized Treatment Center at Lehigh Valley Health Network. Through her years of working for people with ALS, she has come across many amazing stories, but she wanted a special way to highlight them.
Lenny Rafalko is a person with ALS who attends the ALS Treatment Center at LVHN. He was looking for an uplifting project, especially as the global pandemic turned the world upside down for everyone. Jessie and Lenny collaborated and created their own special podcast called Roots Radio to showcase some of these personal ALS stories.
In this Talk to Defeat ALS Podcast, Lenny and Jessie talk about the creation of Roots Radio, what they hope to accomplish, how ALS has affected them personally, the work of the Philadelphia Phillies to Strike Out ALS, and more.
Listen and share and find their podcast online at: https://rootsradioals.captivate.fm/
Join the LVHN team for the Lehigh Valley Walk to Defeat ALS at www.lehighvalleywalktodefeatals.org
Learn more about ALS, our services, and how to get involved at www.alsphiladelphia.org
The ALS Association continues to find new ways to listen to all parts of the ALS community to better deliver its mission. In this Talk to Defeat ALS Podcast, Sarah Parvanta discusses the new ALS Focus survey project.
Topics include:
- Developing the right surveys using expert input
- What The ALS Association has already learned from surveys
- How people can participate and what voices are needed
- Creating the next round of surveys
Listen and share and learn more about ALS Focus at https://www.als.org/als-focus
Follow The ALS Association on Twitter @alsassociation and follow our Chapter on Twitter @alsphiladelphia and online at www.alsphiladelphia.org
Jim Doyle has long been known as the voice of Berwick Bulldogs football. In this Talk to Defeat ALS podcast, Jim talks about the life of Bulldogs Coach George Curry and Coach Curry's battle with ALS, the disease that ultimately took his life in 2016. Jim discusses how the community rallied around Coach Curry and created the Berwick Walk to Defeat ALS.
This year, the Walk to Defeat ALS is using the Walk Your Way concept so that everyone can participate! Register for a walk now at www.walk2defeatals.org
A new season of the Talk to Defeat ALS Podcast starts with Steve Spaulding, Director of Care Services at The ALS Association Greater Philadelphia Chapter as he discusses how The ALS Association has adapted to the challenges surrounding COVID-19.
In this episode, we discuss:
- Transitioning to Telehealth
- How Care professionals are helping more ALS families than ever
- Steps you can take to stay safe and keep others with ALS safe
- Why people with ALS are more at risk from COVID-19
Listen and share this discussion on whatever program you use for podcasts and support the fight against ALS at www.alsphiladelphia.org
Thank you to our sponsor First Keystone Community Bank for making this episode possible. If you have a topic or guest suggestion for the Talk to Defeat ALS, email Tony@alsphiladelphia.org
The ALS Association Greater Philadelphia Chapter is proud to have many exceptional nurses on staff to provide needed quality care for people with ALS and their families. For Nurses Week 2019, Erica Smith joins the Talk to Defeat ALS Podcast to discuss why she became a nurse, the challenges of being a nurse for The ALS Association, what makes her job so rewarding, and why more people should choose nursing. Erica also talks about her support of the Berwick Walk to Defeat ALS. You can support Walk to Defeat ALS teams, learn about the Chapter's care services programs, and donate to the ALS cause all at www.alsphiladelphia.org
March is National Social Work Month and our own MaryBeth Tomczak is joining the Talk to Defeat ALS Podcast to talk about her role as a social worker with The ALS Association Greater Philadelphia Chapter. She also talks about why she joined the social work field, the challenges of being a social work provider for ALS families, and what she hopes to accomplish this year for the ALS cause. MaryBeth works mostly in North East Pennsylvania, which brings its own unique challenges to providing care with a large geography, different county departments, and different understanding of ALS. Listen, share, subscribe and join MaryBeth and others in the fight against ALS at www.alsphiladelphia.org
March is National Social Work Month and our own Wendy Barnes is coming back to the Talk to Defeat ALS Podcast to talk about her role as a social worker with The ALS Association Greater Philadelphia Chapter. She also talks about why she joined the social work field, the challenges of being a social work provider for ALS families, and what she hopes to accomplish this year for the ALS cause. Listen, share, subscribe and join Wendy and others in the fight against ALS at www.alsphiladelphia.org
March is National Social Work Month and we continue to highlight some of the amazing social workers who are so important to The ALS Association Mission. In this episode, Maryann Jones talks about how she became a social worker and joined The ALS Association Greater Philadelphia Chapter, what it is like working with the team at Hershey Medical Center, the challenges of caring for people with ALS, and why social work is so valuable and necessary.
Listen, subscribe, share, and get involved in the fight against ALS at www.alsphiladelphia.org
March is National Professional Social Work Month and our Chapter is proud to be home to many compassionate and accomplished social workers who go above and beyond to support people with ALS and their families. This month, the Talk to Defeat ALS Podcast will feature interviews with Chapter social workers to learn why they became social workers, what their job entails, the challenges of being a social worker for The ALS Association, and why social work is so valuable. Listen to this special episode with Melissa Coll, Anne Cooney, and Jayne Etskovitz, share, subscribe, and learn more about The ALS Association Greater Philadelphia Chapter and how you can get involved at www.alsphiladelphia.org
The Howard I. Abrams In-Home Care Program is a hallmark of The ALS Association Greater Philadelphia Chapter and a key part of the Chapter's mission for ALS families. In this podcast, Frank Esterle of Home Helpers talks about his organization's history of providing care for people with ALS, the stories that have impacted him personally and helped grow the relationship, and how Home Helpers is sponsoring upcoming events like the Help and Hope Research and Care Forum in March, 2019.
Listen, Share, and Subscribe on iTunes and then join the fight against ALS at www.alsphiladelphia.org
In part two of our two part series on the 2018 Clinical Conference, Chapter Social Workers Anne Cooney and Melissa Coll talk about what they learned at the conference and what they presented as well. Melissa and Anne talk about caregiving and how caregivers can take care of themselves as well.
Listen, subscribe, share, and then learn more about ALS services and how you can get involved at www.alsphiladelphia.org
The ALS Association Greater Philadelphia Chapter's Care Services team recently participated in the 2018 Clinical Conference in Dallas, Texas. Many members of the Chapter team presented ideas and studies they worked on and everyone learned from experts from across the country. In Part 1 of our two part podcast series, Care Services Director Steve Spaulding; Gail Houseman, RN; and Alisa Brownlee, ATP discuss what they presented and learned.
Listen, subscribe, share, and then join us in the fight against ALS at www.alsphiladelphia.org
Scott Smith has produced dazzling visual effects on major Hollywood films for nearly two decades and currently works for Brick Simple to create groundbreaking virtual reality and augmented reality projects. On Wednesday, November 28, Scott will bring his experience and ideas to The ALS Association Greater Philadelphia Chapter's Annual Dinner to talk about how Virtual Reality can be used to create a powerful empathy experience for ALS. This technology can be used for ALS awareness, education, caregiving and more.
Listen, subscribe, share, and then make sure to join us for the Annual Dinner by signing up at www.alsphiladelphia.org/annualdinner
In the latest Five Minute Tip on the Talk to Defeat ALS Podcast, Alisa Brownlee talks about how people with ALS can use a scooter for mobility and answers some questions about their usefulness. Listen, share, subscribe and then get involved in the fight against ALS at www.alsphiladelphia.org
The Talk to Defeat ALS continues with another 5 Minute Tip with Alisa Brownlee. In this episode, Alisa talks about the value of Tech and Support groups and how they can make life better for a person with ALS and their family and caregivers. She explains how to find one near you and how you should be prepared to listen and learn from others.
Listen, subscribe, and do more in the fight against ALS online now at www.alsphiladelphia.org
In this 5 Minute Tip, Alisa Brownlee discusses how a person with ALS could use a Trilogy device and answers some quick questions that people may have. Listen, share, subscribe and then learn more at www.alsphiladelphia.org and follow Alisa on Twitter @ALSAssistiveTec and follow the Chapter @alsphiladelphia
In this latest 5 Minute Tip on the Talk to Defeat ALS Podcast, Alisa Brownlee gives advice for how a person with ALS can call for help from a loved one outside of their home. Tune in and subscribe to our podcast on iTunes for more 5 Minute Tips and support the fight against ALS at www.alsphiladelphia.org
Alisa Brownlee is back with another 5 Minute Tip on our Talk to Defeat ALS Podcast, this time to discuss how a person with ALS can use a cell phone even if they have difficulties using their hands and fingers. Listen, share, subscribe on iTunes, and then visit www.alsphiladelphia.org to learn more about resources for people with ALS and how you can donate and volunteer today.
Social Meida is a valuable tool for everybody in the 21st Century, but it can be even more vital for people with ALS who have challenges with communication and connecting with others. In this Talk to Defeat ALS podcast, Alisa Brownlee and Tony Heyl discuss the benefits and pitfalls of Facebook, Twitter, Instagram, YouTube and even Pinterest. This is also a reminder to follow The ALS Association Greater Philadelphia Chapter on social media @alsphiladelphia
Listen, Share, subscribe, and donate today at www.alsphiladelphia.org
In this latest 5 Minute Tip edition of the Talk to Defeat ALS Podcast, Alisa Brownlee discusses the importance of using the words Yes, No, and Maybe when communicating with a person with ALS. Many people with ALS struggle with speech and developing a Yes, No, Maybe approach to communicating can be vital to their quality of life.
Listen, share, and then get involved by donating or volunteering in the fight against ALS at www.alsphiladelphia.org
In this latest Five Minute Tip, Alisa Brownlee talks about the importance of a Go Bag for a person with ALS in case of emergencies. She talks about what to include in a Go Bag, where to put it, and why it is so vital. For more questions about a Go Bag, emergency preparedness, or Assistive Technology, email Alisa at Alisa@alsphiladelphia.org
Donate, advocate, and volunteer in the fight against ALS at www.alsphiladelphia.org
A diagnosis of ALS can be daunting and stressful. In this podcast, Alisa Brownlee discusses what to expect in your first visit to an ALS Association Treatment Center and how the clinic team works to make your experience less stressful so that you can get the care and resources you need. Alisa talks about which healthcare professionals you will meet, how to prepare for your first visit, asking questions, and what kind of follow up you and the care team will do after that visit. To learn more about the ALS Treatment Centers through The ALS Association Greater Philadelphia Chapter, visit www.alsphiladelphia.org and if you live outside of PA/NJ/DE visit www.alsa.org to find a chapter and clinic near you.
Donate, advocate, and volunteer at www.alsphiladelphia.org and make sure to follow on social media @alsphiladelphia
Alisa Brownlee discusses the benefits of the Amazon Echo device for people with ALS to navigate their homes and lives. Listen, share, and learn more about resources for people with ALS caregivers at www.alsphiladelphia.org and follow on social media @alsphiladelphia
As part of ALS Awareness Month, Larry Delaney joins our Talk to Defeat ALS podcast to talk about his family's long battle with the disease, his involvement with the Chapter on the board, and how you can make a difference. Listen to hear his personal story and then join him at an upcoming ALS event with Delaney Strong or any of our families at www.alsphiladelphia.org
Each year, hundreds of ALS advocates go to Washington, DC to share their stories with their members of Congress and seek continued funding for ALS research. In this podcast episode, Public Policy Director Tony Heyl and Chapter Care Services members Alisa Brownlee and Melissa Coll discuss the ins and outs of ALS Advocacy, how to organize a meeting, and how to navigate Capitol Hill.
Listen, subscribe, and get involved at www.alsphiladelphia.org or www.alsa.org
One of the most valued parts of The ALS Association Greater Philadelphia Chapter's Care Services is the Howard I. Abrams In-Home Care Program. In this podcast, Chapter social worker Wendy Barnes discusses how she runs the In-Home Care program, what the goals of the program are, how it has evolved over the years and grown to help more families, and how she makes sure that everyone gets the right fit for a caregiver.
Listen, subscribe, share, and make sure to donate to support this program at www.alsphiladelphia.org
For the tenth year in a row, Tom Scamuffa and his Team Scamuffa ae hosting a Car Show in Wagontown, PA to help raise money for ALS care and research. In this Talk to Defeat ALS podcast, Tom talks about the inspiration for his car show event, what people can expect to see this year, and learn how you can join him for this year's Team Scamuffa Car Show on Saturday, April 28. Listen, share, and then learn more at https://teamscamuffa.shutterfly.com or email teamscamuffa@gmail.com
The Arthur and Lea R. Powell Care Services Department is the heart of The ALS Association Greater Philadelphia Chapter's mission. In this special Talk to Defeat ALS podcast, Director of Care Services Steve Spaulding provides an overview of his department, how it is organized to best serve families affected by ALS, and how the Chapter is improving these programs to ensure that each person with ALS gets the quality care that they need.
Listen to Steve highlight the various levels of care provided, share this podcast with others, subscribe on iTunes, and make sure to donate or get involved in the fight against ALS at www.alsphiladelphia.org Follow us on social media @alsphiladelphia
Father John Wagner has lived an exciting and inspired life. He has helped design airports, traveled the world, raised a family, and provided comfort for those in need. In this podcast, Father John talks with us about his life and about his path to becoming diagnosed with ALS, how he shared that news with his church and friends, his involvement in the Walk to Defeat ALS, and his hope for others, particularly caregivers. Listen, subscribe on iTunes, and then get involved today in the fight against ALS at www.alsphiladelphia.org
Over 15 years ago, Bob Goudie and the Goudie family launched the Ocean City Board...Walk to Defeat ALS in honor of Bob's wife. Since then, the walk has raised millions of dollars to support the fight against ALS and raised hope for many ALS families in New Jersey and beyond.
In Part Two of our two part Talk to Defeat ALS series with the Goudie family, Bob, Kevin, Debby, and Sam talk about the people who have inspired them over the past 15 years, the incredible support from Village ShopRite and the Ocean City community, and how they continue to innovate the walk each and every year. Listen, share, subscribe, and make sure to Register and Donate for the 2017 Ocean City Board...Walk to Defeat ALS on Saturday, September 16 at www.oceancitywalktodefeatals.org
Over 15 years ago, Bob Goudie and the Goudie family launched the Ocean City Board...Walk to Defeat ALS in honor of Bob's wife. Since then, the walk has raised millions of dollars to support the fight against ALS and raised hope for many ALS families in New Jersey and beyond.
In Part One of our two part Talk to Defeat ALS series with the Goudie family, Bob, Kevin, Debby, and Sam talk about their team Jo's Rowdy Goudies and about how the walk began, gaining support in the community, making new friends in the ALS cause, and why they continue to build every year. Listen, share, subscribe, and make sure to Register and Donate for the 2017 Ocean City Board...Walk to Defeat ALS on Saturday, September 16 at www.oceancitywalktodefeatals.org
In Part 2 of the What Happened When Podcast, Joan Borowsky continues to look back on her 20 years with The ALS Association Greater Philadelphia Chapter with stories on the Philadelphia Phillies, the Billy Lake Basketball Marathon, the Walk to Defeat ALS, and more. You will understand more about how The ALS Association doesn't look at ALS families as a list or patients as another statistic, but instead looks at everyone as individuals with their own powerful stories. Listen, share, subscribe on iTunes and make sure to join us at the 40th Anniversary Gala on November 9 by getting tickets at www.alsphiladelphia.org/gala
2017 marks the 40th anniversary of The ALS Association Greater Philadelphia Chapter. It also marks the 20 year anniversary of Joan Borowsky working at the Chapter to support ALS families! In this special podcast series called What Happened When, Joan talks about some of her favorite moments in her two decades with the Chapter, funny times with the Phillies, and early memories meeting people who are leading the fight against ALS.
Listen, share, subscribe, and then join us for our 40 year anniversary gala on November 9 at www.alsphiladelphia.org/gala
Mike Deeley was diagnosed with ALS less than one year ago and in that time, he has already done a great deal to advance the mission of The ALS Association and fight for quality ALS care and research. In this podcast, Mike talks about the military connection to ALS, how he first noticed symptoms, and how he has started to get involved helping others. Listen, subscribe, share, and do more for the ALS cause at www.alsphiladelphia.org and follow on social media @alsphiladelphia
In part 2 of our Podcast discussion with Mike Deeley, he shares more about how he is working to support ALS patient care and research through advocacy and local events. Mike shows that as tough as ALS is, he's even tougher, and he's proving that with his rugby events and challenge through https://rugbysmashals.org/
Listen, share, and watch their video at https://rugbysmashals.org/ as well as find more ways to advocate and donate at www.alsphiladelphia.org Make sure to follow on social media @alsphiladelphia as well!
Thank you to Mike Deeley for sharing his ALS story and for his service to the country as a US Navy veteran.
2017 marks the 40th Anniversary of The ALS Association Greater Philadelphia Chapter and part of Advancing the Mission includes expanding access to quality care for people with ALS and their families. The most important way to do that is through the ALS Clinics. In this podcast, Dr. Mary Sedarous discusses her team's work at the Hackensack Meridian ALS Center and their part in the ALS mission. As part of this podcast, Dr. Sedarous talks about the complications of ALS care, the benefits of a multidisciplinary approach, how her team works together, her experience with ALS, and her support of the Walk to Defeat ALS and other events. Listen, share, subscribe on iTunes, and get involved today at www.alsphiladelphia.org/40years
George Pagano did something that few others have ever been able to do. In 2015, George rowed across the Atlantic Ocean, along with his rowing partner Caitlin Miller as part of the Talisker Whiskey Atlantic Challenge. He did it all to raise money to fight ALS in memory of his grandfather. In this podcast, George talks about the preparation for his journey, the help he got along the way, and how being on the open water got him closer to the ALS cause. Listen, share, subscribe on iTunes, and also learn more at http://www.thecranialquest.com/
Join the fight against ALS by donating, volunteering, or advocating at www.alsphiladelphia.org
Friend of the 'Pod Marcia Telthorster joins Tony Heyl and Jamey Piggott to talk about the upcoming Ride to Defeat ALS and her team, Legs 4 Greg, honoring her husband Greg Telthorster. Marcia and Jamey discuss the logistics of the ride, how it can be fun and challenging, the end point at Morey's Piers, and why this event has been so special for the Telthorster family. Listen, subscribe on iTunes, share the podcast, and join Legs 4 Greg and other teams at the Ride to Defeat ALS by registering or donating at www.als-express.org
Nurses Week is the first week of May. The ALS Association Greater Philadelphia Chapter is thrilled to have exceptional nurses on staff to provide quality care to ALS families. In this Podcast, three ALS Association nurses who work at the ALS Treatment Center at Penn State Hershey Medical Center talk about working for the Chapter, what kind of work they do on a daily basis, and why they became nurses in the first place.
Listen to nurses Sue Walsh, Maureen Reid, and Annette Miller discuss their different paths to nursing and their equally different paths to ALS and then join them for the Hershey Walk to Defeat ALS at www.hersheywalktodefeatals.org
Find more ways to get involved at www.alsphiladelphia.org
Social Workers are at the forefront of The ALS Association Greater Philadelphia Chapter's mission for ALS families. What does a Chapter social worker do though? In this podcast, Chapter social workers Melissa Coll, Anne Cooney, and Jayne Etskovitz talk about their combined 60 years of experience in social work, how they assist persons with ALS and their families, and some of their favorite memories and events at the Chapter.
Listen and learn about the value of social work and get involved during the Chapter's 40th anniversary at www.alsphiladelphia.org today.
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
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/
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
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
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
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
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
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
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.
Join them on Sunday, November 6 by registering or donating at www.greaterphiladelphiawalktodefeatals.org
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!
Click here to see pictures of 4 on 4 for a Cure and learn about these incredible young people.
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.
Listen, subscribe on iTunes, and get involved further at www.alsphiladelphia.org
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.
Listen, share, and get involved in supporting ALS care and research at www.alsphiladelphia.org
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
Military veterans are twice as likely to be diagnosed with ALS as the general population. In this podcast, Violet Graham of the Paralyzed Veterans of America talks about her role in supporting veterans with ALS, making sure that they get the services that they need and deserve, and advocating for their families. Violet works with The ALS Association to connect veterans in Pennsylvania to multiple services to ensure that they get help quickly and efficiently. Learn more about what the PVA does for people with ALS at http://www.pva.org/site/c.ajIRK9NJLcJ2E/b.7896959/k.50AF/Find_ALS_Information_and_Resources.htm
Sandra Sage of West Chester, PA just recently joined the Chapter board and she is very familiar with ALS, having lost her mother to the disease in 2006. She has assisted the Chapter in enlisting the support of her employer, Clemens Food Group and is highly motivated to promote the many Chapter events in the area such as the Walk to Defeat ALS®. Sandra has worked in the grocery business for thirty years and brings fresh ideas, energy, and dedication to the ALS cause.
Listen and share her podcast and get involved at www.alsphiladelphia.org
Cory Walts, the Fitness Center Director and Strength and Conditioning Coach at Haverford College, has been organizing the Joe Schwartz '83 Memorial 3k Run/Walk since 2008. In this podcast, Cory talks about his years organizing this great event, the support from students, staff, and alumni, and how this activity has grown over the years to raise thousands of dollars for the ALS cause. Listen, subscribe on iTunes, share, and join the Ninth Annual Run/Walk on Sunday, April 24 by signing up at https://www.facebook.com/JoeSchwartz3K or at http://haverfordathletics.com/genrel/joe_schwartz_information_SC
Pennsylvania State Representative Bryan Cutler returns to the ALS Podcast to talk about his personal history with ALS and the power of advocacy. He is joined by Greater Philadelphia Chapter President Ellyn Phillips as she shares her ALS story on the podcast for the first time and talks about how she and Bryan have known each other for over 20 years in their united battle to end ALS. In this episode, Bryan and Ellyn talk about how ALS has impacted their lives, the value of sharing stories with elected officials, and the growth of The ALS Association in Pennsylvania over the past decades. They also talk about why you should participate in ALS Advocacy in Harrisburg on Wednesday, May 18 or visit Washington, DC from May 8-10. Email Tony@alsphiladelphia.org for more details on how to get involved.
It’s #PodcastDay and today, Tom Giordano of Pond Lehocky Stern Giordano, LLP joins the #Podcast to share his personal story about losing his uncle to ALS and how that experience has influenced his legal career, helping people with Social Security Disability, including others with ALS. Tom is also proud to be among our first sponsors for the 2016 Greater Philadelphia Walk to Defeat ALS. Listen, share, comment, and then join Tom and thousands of others at a walk near you at www.gpcwalktodefeatals.org or find more events at www.alsphiladelphia.org
Chris Scofield and Scott Israel are both passionate about ALS and the ALS Express bike ride. In this podcast, they talk about their past experience with the ride, their new role on the bike committee, and about how their personal connections to ALS make them so dedicated to finding a cure. Listen, subscribe, share, and then join them at ALS Express on Saturday, June 18, ending at Morey's Piers, by registering at www.als-express.org
The Lake-Quinn family has been raising money for ALS research for 25 years in memory of Billy Lake and in this Podcast, Dan Quinn talks about the quarter century of work for the ALS cause, how loved Billy was by family and friends, and the work that he and Patti Lake-Quinn do for their multiple events with the Chapter. Learn more about the Billy Lake NCAA Beef and Beer on Friday, March 18 and the fall Billy Lake Basketball Marathon at www.billylake.org and get involved today
In the fall of 2015, Chris Martin, Chair of the Greater Philadelphia Walk to Defeat ALS, talked about his family story on our ALS Podcast. Now his mother, Christina Martin, talks about working with her son to fight ALS, how her husband Wayne fought ALS nearly 10 years ago and the Chapter services that helped then, the many events she enjoys, and her extensive work on the Chapter's board. Listen, subscribe on iTunes, and then get involved in the ALS cause today at www.alsphiladelphia.org
Jill Cawthern was just 9 years old when her father Tom passed away from ALS in 2001. Since then, her family has continued to fight ALS in his name in many ways, especially with ALS Advocacy. For a decade now, Jill has attended ALS Advocacy Days in Washington, DC with her mother Jayne, where she has made friend and, more importantly, made a difference in securing funding for vital research programs. Listen, share, subscribe, and join us for Advocacy Days in Washington, DC from May 8-10 at www.alsa.org/advocacy/
Jen LaRegina has been a nurse with The ALS Association Greater Philadelphia Chapter for eight years, with a focus on Northeast Pennsylvania. Her hometown of Sugarloaf may be small, but she has a wide reach to help people with ALS and their families. In this podcast, Jen talks about how care has improved in her eight years, providing services to a rural population, and the benefits of technology. This May, Jen will be involved with the NEPA Walk to Defeat ALS. Join her at www.nepawalktodefeatals.org
Jamey Piggott has worked for The ALS Association Greater Philadelphia Chapter for roughly six months, but he's been connected to the ALS cause for many years. In this podcast, Jamey shares stories of his friend Wes's battle with ALS, how the events department works at the Chapter, and what he learned at the annual ALS Association Leaderships Conference. Jamey is very involved in the ALS Express Ride to Defeat ALS, Hot Chocolate, and the Walk to Defeat ALS. Join him at one of these events at www.alsphiladelphia.org
Everyone involved in the fight against ALS has an inspiration. For Tony Heyl, the Director of Communications and Public Policy at the Greater Philadelphia Chapter, that inspiration was his grandfather, who passed away in 2007 from the disease. In this podcast, Tony talks to his dad, Tom Heyl, about caring for someone with ALS, facing tough conversations with a loved one, and the support of a local ALS Association Chapter. Listen, share, subscribe on iTunes, comment, and then support the ALS Care Appreciation Fund at www.alsphiladelphia.org/careappreciation
Bob Grimes is loving husband to Despina, who has been living with ALS for ten years. He appreciates every day with her, but he also realizes that he needs help along the way to be a caregiver and to relieve some of his own stress. In addition to using the clinic services at Hershey Medical Center, Bob and Despina have begun using the Howard I. Abrams In Home Care Program, which provides up to 12 hours of in home care for a person with ALS per week. Listen, share, subscribe on iTunes and support this program at www.alsphiladelphia.org/abrams
Episode 1 of the ALS Podcast featured Larry Kaplan talking about Hot Chocolate 2015. Now, one year later, his wife Jill Kaplan joins the podcast to talk about Hot Chocolate 2016! She is joined by Maryellen Bowers of Cakes and Candies by Maryellen as they both discuss how they prepare for the annual Hot Chocolate event, what guests can expect, recruiting sponsors, and why you should attend this year. Learn more about Hot Chocolate at Adventure Aquarium at www.alsphiladelphia.org/hot-chocolate
Phil Avillo is a United States Marine veteran of the Vietnam War, an amputee, college professor, coach of many sports, loving husband and father, and is living with ALS. His many years of life experience, particularly his willingness to walk away from what was familiar at points in his personal history, have prepared him for this next step of being an ALS advocate. As Phil gets ready to raise awareness for the Hershey Walk to Defeat ALS, he joins the ALS Podcast to discuss his life, his diagnosis, and what he hopes to accomplish next. Listen, share, subscribe, and join his walk efforts at www.alsphiladelphia.org
ALS Association Greater Philadelphia Chapter staff nurse Gail Houseman started the Chapter's Visiting Volunteer program 15 years ago. Since then, over 100 volunteers have participated in the program to provide help and companionship to people with ALS in the Chapter's area. Kelly Slipakoff was the very first VV and she continues to be involved in the program to this day. In this podcast, Gail and Kelly talk about the program, what they've learned, and how to be good friends to those living with the disease and their families. Get involved today as a volunteer, advocate, or donor at www.alsphiladelphia.org
Sarah Brendle was diagnosed with ALS in 2009. Since then, she has been active in the ALS community and active as a mother raising three smart, caring children. In this podcast, she discusses how it felt to learn that she had ALS, the help from her family, the services from The ALS Association, and the many events that she has participated in over the years. Sarah also talks about the value of sharing her story with others. Listen, share, subscribe on iTunes, and get involved today at www.alsphiladelphia.org
In the final ALS Podcast of 2015, Steve Hildebrand talks about his wife's battle with ALS, the events the family has participated in over the years, and raising a young daughter all along the way. He explains the many challenges of being a caregiver. Listen, subscribe on iTunes, and honor caregivers with a donation at www.alsphiladelphia.org/careappreciation
Karen Stull cared for her brother during his battle with ALS 15 years ago. That caregiving experience continues to impact her to this day. Listen to her perspective on ALS, being a caregiver, and how the disease affects an entire family and then get involved at www.alsphiladelphia.org
As the Holiday season gets into full swing, Meg Dresher talks about how her family has united in support of her mom during her battle with ALS. In this podcast, we discuss the challenges of getting diagnosed, services from the Greater Philadelphia Chapter, and caring for caregivers. Listen, share, subscribe on iTunes and support those who provide care at www.alsphiladelphia.org/careappreciation
After being diagnosed with ALS, Andy Miller took on every opportunity to raise awareness and to find a cure. He has started his own awareness effort called One and Half Legs to let people know about his life with ALS and the latest in research across the world. In this podcast, Andy shares his story and his hopes for an end to ALS.
Dr. Scott Mackler lived with ALS for over 15 years. In that time, he lost his ability to walk, eat, and speak, but he remained very active in his professional and family lives, raising his sons and coordinating groundbreaking research himself. He also started the Scott Mackler Assistive Technology Program to make sure that people with ALS can get the tools they need to communicate and live fuller lives. In this podcast, his sons Noah and Alexander talk about their father, the results of the Assistive Technology Programs, and their vision for the future in the fight against ALS. Listen, share, subscribe on iTunes, and get involved at www.alsphiladelphia.org
ALS Association Greater Philadelphia Chapter Executive Director Jim PInciotti joines the ALS Podcast to talk about his 20 years of being involved with the Chapter. In this special Thanksgiving episode, we talk about what are thankful for in the fight against ALS and why there is so much more to accomplish. Find out how to get more involved at www.alsphiladelphia.org
Anne Cooney has over two decades of experience as a social worker and in this podcast, she talks about her role in making sure that people with ALS get all of the services they need to live to their fullest potential. We talk about the social worker's efforts to help people navigate the healthcare system, getting people in touch with the right support, and how the social workers at the Chapter continuously go above and beyond at every opportunity. Listen, share, and get involved at www.alsphiladelphia.org
Bill Hemsing passed away from ALS over 15 years ago, but the impact of his disease is still being felt by his surviving family members. During his time living with ALS, his daughters, his son, and his wife learned to be caregivers and they grew closer together as a result. Listen to their story in this podcast as they get ready to participate in this year's Annual Luncheon honoring ALS caregivers. Donate online today at www.alsphiladelphia.org
Kristen Colby has been a supportive wife and caregiver for her husband Craig Colby during his long battle with ALS. In this podcast, she discusses what it means to be a caregiver, why she likes the Walk to Defeat ALS, and the anticipation for the Chapter's Annual Luncheon on Friday, November 13 honoring Caregivers. Learn more about the luncheon at www.alsphiladelphia.org/luncheon
Paul Miller is living with ALS and using his personal experience with the disease to educate young people, advocate with public officials, and raise money for a cure. Listen to what he tells people about the realities of ALS and what experiences he finds most enjoyable as he works to end ALS for himself and others. Get involved today at www.alsphiladelphia.org and support a Walk to Defeat ALS, which Paul loves as well, at www.gpcwalktodefeatals.org
ALS Association Greater Philadelphia Chapter board member Lauren Stevenson Yacina talks about her 30 year involvement with the Chapter, her mother's battle with ALS, support from the Philadelphia Phillies, and why she is looking forward to the Walk to Defeat ALS and the Annual Luncheon honoring caregivers. Find out how you can get involved at www.alsphiladelphia.org
Debbie Ihde and her family created a Tribute Fund to honor her late husband, Dave Ihde, who did everything he could to fight ALS for himself and for others. That included ALS Advocacy and fundraising, but also participating in research like a study on Brain Computer Interface with Andrew Geronimo. In this podcast, Debbie talks about her husband and Andrew Geronimo discusses the potential for this new brain technology to help people with ALS and other diseases. Listen and then get involved at www.alsphiladelphia.org
Brenda Edelman is the Director of Patient Services at The ALS Association Greater Philadelphia Chapter. In this podcast episode, she talks about how her background as a social worker helps guide her management and values while running the patient services department, how her staff is organized to best help people with ALS, and how her role has evolved in her decade with the Chapter. Listen, share, and get involved today at www.alsphiladelphia.org and join Brenda at the Greater Philadelphia Walk to Defeat ALS on November 1 at www.greaterphiladelphiawalktodefeatals.org
Mikaelyn Austin and Rob Marcolina of Philly Philms have been recording stories about ALS since 2011, first with the Phillies Phestival and now producing feature profiles for the national ALS Association. As outsiders to the disease, they've come to understand how ALS affects whole families and the impact of ALS Association programs and research. Listen to their perspectives and get involved today at www.alsphiladelphia.org
Alisa Brownlee makes her second appearance on the ALS Podcast, this time to talk about how ALS families can prepare for emergencies and be ready in the event of a natural disaster. From "Go-Bags" to contact lists to important devices, Alisa gives tips on how to be ready and where to go for further resources. After the tough winter of 2014-15, this information can be vital to a person with ALS and their caregivers. For further questions, email Alisa@alsphiladelphia.org or tweet her @ALSAssistiveTec
In this Podcast, Wendy Barnes talks about her 15 years of working with The ALS Association Greater Philadelphia Chapter. From her start running an ALS support group to her work today managing the Howard I. Abrams In-Home Care Program, Respite Care, and the Accessibility Fund, Wendy discusses how she does her job, what ALS means to her today after over a decade with the Chapter, and her efforts with the Lehigh Valley Walk to Defeat ALS. Join Wendy at the walk on October 17 at Coca Cola Park in Allentown, PA at www.lehighvalleywalktodefeatals.org and find out more about supporting the ALS cause and the programs Wendy mentions at www.alsphiladelphia.org
Donn’s Dash is named in honor of Donn Schmidt, a beloved husband, father and resident of Northeastern Pennsylvania. Tim Seigfried and his friends at eBay Enterprise helped create this 5k event in downtown Wilkes-Barre, PA to surprise their coworker, Brianne Schmidt. Together Brianne, Tim, and the team created and organized this event from scratch and, in their first year, raised over $15,000 for ALS care services. Listen to Tim and Brianne talk about their experiences in this episode of the ALS Podcast and then continue the fight against ALS at www.alsphiladelphia.org
Sue Walsh, Director of Clinical Services at the ALS Association Treatment Center at Hershey Medical Center, joins the podcast to talk about her two decades of providing nursing care to people with ALS. In this episode, Sue discusses how the clinic has grown at Hershey Medical Center, the work of Dr. Zach Simmons, coordinating care and research, and how the work impacts her personally. Support her team for the Hershey Walk to Defeat ALS all year long at www.hersheywalktodefeatals.org or donate generally at www.alsphiladelphia.org and follow on social media @alsphiladelphia
BAYADA Home Health Care is a national partner with The ALS Association, a relationship that began locally with The Greater Philadelphia Chapter. In this podcast, Tracy Sideris, Ali Nielsen, and Emma Straub of BAYADA talk about working for a values driven company, how partnering with The ALS Association at many events has mutual benefits for all involved, and what they have learned about ALS and improving quality care since the relationship began. Join them at a Walk to Defeat ALS at www.gpcwalktodefeatals.org and follow BAYADA on Twitter and Instagram @BAYADAHHC
Judy Lyter and Travis Haines from Penn State Milton S. Hershey Medical Center join the ALS Podcast to discuss their surveys to screen for froto-temporal dementia in persons with ALS. Their screening process will help guide better treatment, start the discussions on brain health and cognition earlier in the ALS journey, and provide comfort and resources to family caregivers. Listen, share, and get involved at www.alsphiladelphia.org
You may have donated to ALS research, but what is that research money funding? In this podcast, Dr. James Connor of Hershey Medical Center talks about his research, funded through The ALS Association, which focuses on the effect of iron and oxygen on ALS. He speaks about understanding ALS, what the differences are in people living with the disease, the advancements in biomarkers, and the challenges and opportunities of research generally. Continue to support ALS research all year long at www.alsphiladelphia.org
Allison Lardner is the Associate Director of the national Walk program at The ALS Association. In this podcast, she talks with us about what makes the Walk to Defeat ALS so special and effective, how a company can be successful as a sponsor, and why people come back year after year to participate in a walk. Listen, share, and join a Walk to Defeat ALS in our Chapter region at www.gpcwalktodefeatals.org
Greater Philadelphia Walk to Defeat ALS chair Chris Martin talks about the Walk to Defeat ALS, getting corporate sponsorship, and, most importantly, the effect his father's battle with ALS had on him and his family. Join Chris at a walk this fall at www.gpcwalktodefeatals.org
Jeanette Beck was the top individual fundraiser for the 2015 Hershey Walk to Defeat ALS this May and it was also Kerry Durkan's first official walk as part of the ALS Association Greater Philadelphia Chapter staff. Listen as Kerry talks about her first experience with a walk and Jeanette shares how she has used her personal story for years to raise money and awareness to fight ALS, including establishing a Named Fund. Continue to Challenge ALS at www.alsphiladelphia.org and support a walk at www.gpcwalktodefeatals.org all year round.
Melanie Fried-Oken, Ph.D., CCC/Sp is a certified speech-language pathologist and a leading international clinician and researcher in the field of Augmentative and Alternative Communication. In this podcast, Dr. Fried-Oken talks about Brain Computer Interface and how this emerging technology will help people with ALS and others who are "locked in" communicate with the world and have a higher quality of life. Listen and then get involved at www.alsphiladelphia.org and follow on social media @alsphiladelphia