The ALS Association Greater Philadelphia Chapter

Thank you to everyone who joined us for the Lehigh Valley Walk to Defeat ALS! The walk itself may be over, but you can still donate to a team from any walk at www.Walk2DefeatALS.org

We can't wait to see our friends this Saturday at the Lehigh Valley Walk to Defeat ALS! Watch and share this story and support walk teams today at www.Walk2DefeatALS.org https://www.wfmz.com//article_6e670fe2-27af-11ec-9d7a-c397

In this video from the 2021 Help & H ope Symposium, Heather and Steve Hildebrand discuss the challenging decision of whether to use a ventilator as Heather's ALS symptoms progress. Watch and share and watch all videos of the 2021 Help & Hope Symposium videos at www.helpandhopeals.org Learn more about ALS, our programs and services, and how to support the ALS mission at www.alsphiladelphia.org

Thank you to everyone who attended the Roger Kirk ALS Association Golf Outing Hosted by Greg Gross, from golfers, sponsors, those who donated the raffle prizes, volunteers, the OYRCC staff, and the Kirk family. After a little morning rain, it turned out to be a beautiful day on the golf course. Congratulations to our winning foursome: Doug Proctor, Jerry Shea, Keith Heidecker, and Jeff Taylor!

Sue Laino spoke about the venting decision for a person with ALS as part of our 2021 ALS Help & Hope Symposium. Watch and share the story of Sue and Gary and find more videos from our Symposium at www.helpandhopeals.org To learn more about ALS, our programs, and how you can support our mission, visit www.alsphiladelphia.org

Share this post to help us recognize our October Volunteer of the Month... Nina Kelly! From the Billy Lake Basketball Marathon to the Walk to Defeat ALS to the Mushroom Festival and so much in between, Nina continues to give back to the ALS cause in loving memory of her husband Mark Kelly. Read more at: http://webpa.alsa.org//PA_Cha/PA_6_Volunteer_of_Month.html

Tomorrow, The ALS Association, in collaboration with The National Organization for Rare Disorders (NORD), Cystic Fibrosis Foundation and Muscular Dystrophy Association, is hosting a special COVID-19 Vaccine Update Webinar on January 15, 2021, at 2 p.m. ET. The webinar, intended for patients, caregivers, advocates and the general public, will address COVID-19 vaccine authorizations and upcoming vaccine candidates, along with other special considerations for rare disease patien...ts. Speakers will include Dr. Stephen Hahn, Commissioner of Food and Drugs, FDA, and Dr. Peter Marks, Director, Center for Biologics Evaluation and Research, FDA. To register: https://bit.ly/Vaccine-Webinar Our Chapter is working hard to advocate for all people with ALS and caregivers in order to ensure access to the COVID-19 vaccine and provide safe, quality care. Each State has its own process for vaccine prioritization and distribution: Pennsylvania's website for updates, & to find out when you can register for the vaccine is https://www.health.pa.gov///coronavirus/Pages/Vaccine.aspx New Jersey’s website to pre-register for the vaccine is live now: https://covidvaccine.nj.gov/ Delaware’s website for comprehensive vaccine information is available at: https://coronavirus.delaware.gov//vaccine-information-for/ We are here to assist you in any way we can. You are welcome to contact your Care Services Team member. If you don't know your specific team members name or number, you can call us at 215-643-5434 Option 3. If you have specific questions about the safety and efficacy of these vaccines, please contact your primary care physician.

More members of our Chapter care team have received the first dose of the #covidvacccine, including Alisa Brownlee, ATP, CLIPP, CAPS, WSP and Anne Cooney, MSW, LSW. We are incredibly grateful to our care professionals who have worked at a higher level than ever imagined for our ALS families. Vaccination is yet another important part big our commitment to safety and support for the entire ALS community. For more information on our ALS program and services, please visit www.alsphiladelphia.org #ALS #covidvacccine #covid_19 #coronavirus #alsinthistogether #alsawareness #vaccine #endals

Today our Director of Care Services, Steve Spaulding, received the Covid-19 vaccine. The ALS Association is working hard to provide information to the ALS community about how and when they can access the vaccine and we are advocating for care professionals to receive the vaccine so that we can accomplish our mission on behalf of all of our families. Throughout the pandemic, our care team has adapted to meet the immediate needs of all people with ALS. We will do all we can to ...continue to keep our ALS families safe. Join our cause at www.alsphiladelphia.org #covid_19 #covidvacccine #vaccine #ALS #coronavirus #alsinthistogether #alsawareness

Don't miss tonight's debut! You are invited to watch tonight’s premiere of an exciting new TV series on Amazon Prime Video, Wolf PAC of Philadelphia. Kent Griswold and Len Lodish, both dedicated supporters of our ALS mission, star along with other successful entrepreneurs. They are the wolves who invest back into our community by helping Philadelphia-area start-ups follow their dreams. Watch as these companies vie for funding and mentoring partnerships. Now, more than ever, our small businesses need help. By watching this show, you will be supporting our cause as viewership numbers will lead to donations to The ALS Association Greater Philadelphia Chapter, so please tune into this exciting binge-worthy show! Here is a link to see more: https://www.youtube.com/watch?v=wrj59eu4RDs&feature=youtu.be

On December 2, the U.S. Senate passed the #ALS Disability Insurance Access Act. Now, your #ALSAdvocacy is needed to get this bill across the finish line. Ask yo...ur member of Congress to vote YES on the ALS Disability Insurance Access Act when it comes to the floor for a vote. https://bit.ly/3lIc8DE See more

The ALS Association, in collaboration with The National Organization for Rare Disorders (NORD), Cystic Fibrosis Foundation and Muscular Dystrophy Association, is hosting a special COVID-19 Vaccine Update webinar on January 15, 2021, at 2 p.m. ET. The webinar, intended for patients, caregivers, advocates and the general public, will address COVID-19 vaccine authorizations and upcoming vaccine candidates, along with other special considerations for rare disease patients. Speakers will include Dr. Stephen Hahn, Commissioner of Food and Drugs, FDA, and Dr. Peter Marks, Director, Center for Biologics Evaluation and Research, FDA. To register, please visit: https://bit.ly/Vaccine-Webinar

"There is great shock and frustration that there is an arbitrary 5-month wait before benefits start. Many people living with ALS have lost abilities well before... their diagnosis and need help immediately." -Jennifer Necessary, Executive Director of the ALS Association of Arkansas. Thanks to years of hard work by ALS advocates, the ALS Disability Insurance Access Act has passed in the Senate and will be voted on in the House next week. Read more: https://bit.ly/37CbliI

Next week, I will bring the ALS Disability Insurance Access Act to the House Floor for a vote. This bill will eliminate the waiting period for SSDI benefits for... ALS patients - a critically important change for ALS patients and their families. I expect it will pass with strong bipartisan support. See more

#ThankYouThursday - Today we want to celebrate our December Volunteer of the Month... Debbie Trask! After watching her beloved husband Paul battle ALS, Debbie has used her talents to lift up caregivers and support the ALS cause. We appreciate all that she does! Read and share her story today at: http://webpa.alsa.org//PA_Cha/PA_6_Volunteer_of_Month.html

Thank you to all of our ALS advocates who used their stories to advance this important legislation to end the five month waiting period for people with ALS to receive Social Security Disability Insurance! You are powerful! Now onto the U.S. House of Representatives!

Join us virtually on December 2nd at 7:00 pm for designer purse bingo! This fundraising event will feature bags from Michael Kors, Kate Spade, and more! So make sure to mark your calendars because you will not want to miss out on this event, which benefits The ALS Association Greater Philadelphia Chapter. More information coming soon!

Thank you so much to all of our Philadelphia Walk Teams and Walkers! We loved to see all the photos and videos of you Walking Your Way to Defeat ALS.

Team Kirkin' It Walked to Defeat ALS in memory of Roger Kirk. Members of their team Walked in New Jersey, South Carolina, Canada, and England! We are so thankful to the Kirk family for everything they do to fight for a cure.

We appreciate all of our Philadelphia Walk Teams for all of their efforts to Defeat ALS. At this time, we want to shout out our top teams!

Team Special "Kay" Walked to Defeat ALS earlier this morning. We appreciate their team, and all of the Philadelphia Walk Teams, for their continued dedication to defeat ALS.

Debbie's Angels Walked to Defeat ALS in memory of Debbie McAllister. How are you Walking to Defeat ALS today? Make sure to share your photos with us using #PhiladelphiaWalktoDefeatALS and tag us.

The ALS Association launched Unlock ALS at Walk events in 2018 to provide participants with a tangible way to recognize the real reasons we Walk to Defeat ALS. Like Team Linda's Loves share a photo today with your Unlock ALS key using #PhiladelphiaWalktoDefeatALS

Mamma Gottlieb's ALS Fighters are Walking to Defeat ALS in memory of Barbara Gottlieb. Their team walked with signs, balloons, and a banner to let everyone know why they continue to fight for a cure.

Thank you so much to UTZ Quality Foods INC. for their support of the Philadelphia Walk to Defeat ALS!

Glenna’s Gladiators Walk to Defeat ALS in memory of Glenna Bishop and Diane O'Brien. How are you Walking to Defeat ALS? Make sure to share a photo today using #PhiladelphiaWalktoDefeatALS and tag us!

Thank you to all of our National Partners of the 2020 Walk to Defeat ALS. We appreciate the support of the Numotion Foundation, Mitsubishi Tanabe Pharma America, Inc., and Permobil Foundation

This morning, Dan and Patti from Team Billy Lake Memorial ALS Research recorded this video before their Walk to Defeat ALS. A special thank you to Dan Quinn and Patti Lake-Quinn for all they do to help us defeat ALS!

Frank's Fanatics team walked in memory of Frank McAnaney. Their team walked along the beach to spread awareness with their custom "unlock ALS" face masks. As you Walk to Defeat ALS today, make sure to take photos and share them with us using #PhiladelphiaWalktoDefeatALS and tag us!