Subject: Did you see the note about #ALSAdvocacyDay?
From: "Jim Pinciotti, Executive Director" <[email-masked]>
To: "Hunter Biden" <[email-masked]>
Date: Tue, 10 May 2016 15:00:51 -0400

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Did you see the email today from The ALS Association about virtual Advocacy Day? You can use Twitter to let lawmakers know about why we need to end ALS and to raise awareness of the ALS cause.
May is ALS Awareness Month and there are many ways that you can get involved today and all month long. In addition to Advocacy this week and next, here are three other ways that you can make a difference now.
1. Purchase a CURE ALS shirt. We have sold over 200 shirts already to raise money and awareness for the fight against ALS. Buy now and spread the word! Get yours before the May 15 deadline at: https://www.booster.com/alsphilly <https://www.alsphiladelphia.org/page.redir?target=https%3a%2f%2fwww.booster.com%2falsphilly&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>. We need to sell less than 50 more to reach our goal of 250 shirts.

2. Join us for an upcoming Walk to Defeat ALS. Click here to register for a walk <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.kintera.org%2ffaf%2fhome%2fdefault.asp%3fievent%3d1042636&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>, including the upcoming events in Northeast PA and Hershey.

3. Register for the Ride to Defeat ALS on Saturday, June 18, one of the top charity bike rides in the Philadelphia region. Sign up today at www.als-express.org <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.als-express.org&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>.

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I’m one of the lucky ones. After I was diagnosed with ALS in 2004, I was hoping to live long enough to see my sons graduate from high school. As it turns out, I’ve been blessed to have seen them graduate from high school and college. Others are not as lucky. So today, National ALS Advocacy Day, please join me in taking a stand against this brutal disease.

I’ll be on Capitol Hill today, along with hundreds of ALS advocates from across the country, urging members of Congress to do more to increase funding for ALS research and benefits for families confronting this devastating disease.

Help amplify our voices! Almost every member of Congress is active on Twitter – they use it to connect with their constituents and understand the issues that are most important to them. Today, please join our cause by tweeting your ALS story to representatives using the hashtag #ALSAdvocacyDay.
 <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.twitter.com&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>
Our collective voices will make a profound difference to bring awareness to ALS. While we are meeting with members in their offices, your demonstrated support on Twitter shows the magnitude of the ALS community’s dedication to this fight.
Together, we are making a difference!
On behalf of those living with ALS today,
Lorri Carey
Diagnosed with ALS in 2004 at age 38
P.S. – Visit ALSA.org/awareness <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.alsa.org%2fnews%2fpublic-awareness%2fals-awareness-month%2f2016%2flanding.html&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>to learn more about The ALS Association’s legislative priorities—and read the New Medicine Report, which was published just yesterday!

The ALS community recently drafted a patient-focused, FDA guidance document to expedite ALS drug development. It’s the first document of its kind in the ALS field and will be a powerful roadmap to help scientists and the industry bring an effective treatment to market sooner. Before the community submits this guidance to the FDA in June, you have the opportunity to learn more and provide comment <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.alsa.org%2fadvocacy%2ffda%2f&srcid=44559&srctid=1&erid=10719350&trid=4495ca37-7f47-4cd6-af7f-0d9773092da4>.

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