Subject: September ALS News
From: "Marta Rubin Kiesling, ALS Association" <[email-masked]>
To: "R Biden" <[email-masked]>
Date: Thu, 07 Sep 2017 10:53:39 -0400

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Delaware Congresswoman Lisa Blunt Rochester (L) meets with ALS Advocates (L-R) Adam Czerwinski, Kristen and Craig Colby, and the Chapter's Social Worker Melissa Coll and Director of Care Services Steve Spaulding to discuss healthcare and funding ALS research

ALS never takes a break and neither do our families, donors, advocates, or volunteers. This summer, the newly approved ALS treatment, Radicava, became available and our Care Services team devoted their time to educating patients and families about the drug. The team focused on connecting them to resources to help understand how the drug would work for them.You can learn more about this excitingtreatment on our website at www.alsphiladelphia.org/radicava <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.alsphiladelphia.org%2fradicava&srcid=47884&srctid=1&erid=15540736&trid=7ef4b1f9-b1e6-4b19-a410-609283ee40df>.

Chapter advocates were also busy spreading the word about ALS priorities. Craig and Kristen Colby met with their Congresswoman in Delaware, Lisa Blunt Rochester, to explain life with ALS and the need to fund research. In New Jersey, Assemblyman Dan Benson hosted a picnic to honor the Greater Philadelphia Chapter’s 40th Anniversary with local ALS families. You can hear his remarks by clicking here <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.youtube.com%2fwatch%3fv%3dOIDvQhUhJ7w&srcid=47884&srctid=1&erid=15540736&trid=7ef4b1f9-b1e6-4b19-a410-609283ee40df>.
We will continue advancing our mission throughout September and all year long. Here are ways that you can get involved now:

Finally, our hearts go out to all of those affected by Hurricane Harvey ; particularly families with ALS who are facing terrible challenges. In 2012, we saw how a natural disaster can make life especially difficult for somebody living with ALS when Superstorm Sandy devastated parts of our Chapter region, flooding homes and knocking out power for weeks. You can learn more about ALS AND EMERGENCY PREPAREDNESS in our podcast with Alisa Brownlee at http://alsphiladelphia.podbean.com/e/episode-35-alisa-brownlee-on-emergency-preparedness/ <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2falsphiladelphia.podbean.com%2fe%2fepisode-35-alisa-brownlee-on-emergency-preparedness%2f&srcid=47884&srctid=1&erid=15540736&trid=7ef4b1f9-b1e6-4b19-a410-609283ee40df>.

In the aftermath of Sandy, our Chapter assisted ALS families with generators, communication devices, medical equipment, and other emergency needs. If you know people in our Greater Philadelphia Chapter area who are dealing with family or friends affected by this hurricane and need assistance or support, please contact our Care Services team at 215-643-5434 prompt #3.
Our friends in Texas and Louisiana will be dealing with the consequences of this hurricane for years to come. You can support the unique needs of ALS families affected by Hurricane Harvey at http://alsa.org/harvey <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2falsa.org%2fharvey&srcid=47884&srctid=1&erid=15540736&trid=7ef4b1f9-b1e6-4b19-a410-609283ee40df>.

Thank you,
Marta Rubin Kiesling
Executive Director

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260
Ambler, PA 19002
[email-masked] <mailto:[email-masked]>
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