Subject: August News – Three Years After the Ice Bucket Challenge
From: "Marta Rubin Kiesling, ALS Association" <[email-masked]>
To: "Hunter Biden" <[email-masked]>
Date: Tue, 01 Aug 2017 11:16:07 -0400

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(l-r) Social Worker Anne Cooney, Staff Nurse Gail Houseman, Matt Stanley, an editor from Rare Disease Report,Care Services Director Steve Spaulding, AlMorettiand Christine Moretti (seated), a person with ALS, recentlyinterviewed with Rare Disease Report* to discuss The ALS Association's mission. Look for these videos soon!

In August 2014, The Ice Bucket Challenge took over social media across the planet, raising millions of dollars for ALS research. Today, more people are aware of ALS and more scientists are working on treatments and a cure than ever before. There have been many research breakthroughs since then, many ofwhich would not have been possible without money raised through the Ice Bucket Challenge. Theseinclude the development of antisense therapies, the discovery of ALS genes NEK1 and C21orf2, and advances in induced pluripotent stem cells (iPSCs).

This year, the FDA approved Radicava (edaravone) to treat ALS. This is the first ALS treatment approved by the FDA in 22 years. We know that you have many questions about Radicava and we encourage you to read more on our FAQ page at www.alsphiladelphia.org/radicava <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.alsphiladelphia.org%2fradicava&srcid=47699&srctid=1&erid=15135181&trid=567ab9cc-c6d4-46bc-919d-775a15b9f0c3>.

August 2017 is also the official 40th anniversary of The ALS Association Greater Philadelphia Chapter. There are many ways to get involved during this month. Here are a few - as the Ice Bucket Challenge showed us, every action adds up!

Find what path works for you to supportthe ALS mission.Thank you foryour supportnot just today, but for the past 40 years. I hope to see you at one of our upcoming events, especially our Anniversary Gala on Thursday, November 9.
Marta Rubin Kiesling
Executive Director
*Rare Disease Report is a website and weekly e-newsletter that offers an independent voice for the Rare Disease Community. It strives to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs. Lucie Bruijn, ALSA’s Science Director serves on its Advisory Board.

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260
Ambler, PA 19002
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