Subject: FW: What your ALS advocacy means to my research
From: "Jim Pinciotti" <[email-masked]>
To: "Hunter Biden" <[email-masked]>
Date: Sat, 21 May 2016 09:00:06 -0400

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Did you see the latest national email from Dr. Justin Ichida and The ALS Association? Your advocacy, both in Washington, DC and locally, is making a tremendous difference in supporting ALS research and quality care. This past week, I joined dozens of advocates in Harrisburg, PA, where we met with legislators from throughout the state to talk about funding care services. You can click here to see the press conference video <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.youtube.com%2fwatch%3fv%3d5HnZcmitm8Q&srcid=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a> featuring Rep. Bill Adolph and Sen. Rob Teplitz or click here to see pictures <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fwww.facebook.com%2fmedia%2fset%2f%3fset%3da.10154194589694281.1073741909.117607904280%26type%3d3&srcid=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a> from the day.
In addition to what Dr. Ichida wrote in his email from The ALS Association, here are three ways that you can participate in advocacy now –
1.Schedule an in district meeting with your state or federal elected official by emailing our Public Policy Director at [email-masked] <mailto:[email-masked]>
2. Listen to our latest podcast <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2falsphiladelphia.podbean.com%2fe%2fepisode-69-dale-miller%2f&srcid=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a> with advocate and person with ALS Dale Miller
3. Take action to waive the 5 month waiting period for Social Security Disability Insurance <https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fcqrcengage.com%2falsa%2fapp%2fonestep-write-a-letter%3f0%26engagementId%3d204233%26ep%3dAAAAC2Flc0NpcGhlcjAx5EZdgtOAI41TnDTlMCWoFHBBeBxXx8KwoMx-7MYsDvPjJXz0lJ-m0HCNmbhDIjlZjKm1dABGoEzKunK0YmccLJglcBFcq221FRgDsA5qbck%26lp%3d0&srcid=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a> by contacting your member of Congress.
Thank you for all that you do in ALS Awareness Month and all year long.
Jim
________________________________________
<https://www.alsphiladelphia.org/page.redir?target=http%3a%2f%2fcqrcengage.com%2falsa%2fapp%2fregister%3f1%26m%3d11504%26_ga%3d1.207709074.1487519726.1458228553&srcid=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a>
“ALS advocates are critical to ensuring continued government research funding.” – Justin Ichida, Ph.D., ALS Scientist

I am an ALS scientist working to discover targets for drug therapies, specifically around the C9orf72 gene mutation, which is one of the leading known causes of familial (inherited) ALS.
I recently received federal funding from the Department of Defense’s ALS Research Program (ALSRP), which was formed in large part due to alarming statistic that military veterans are twice as likely to be diagnosed with ALS as their civilian counterparts.
Please help keep research like mine funded by becoming an advocate today <https://www.alsphiladelphia.org/advocate?srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a>.

 <https://www.alsphiladelphia.org/advocate?srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a>
ALS advocates’ support of the ALSRP made it possible for me to go from screening 1,000 compounds (to find a target for ALS therapy) to screening over 40,000. I’m now able to work with partners in the pharmaceutical industry to accelerate discovery at a pace like never before.
Under the leadership of Dr. Lucie Brujin, Ph.D., M.B.A, Chair Emeritus of the ALSRP and Chief Scientist at The ALS Association, the ALSRP provides tremendous value to the scientific community and ensures that those of us studying ALS are working together instead of duplicating efforts.
ALS advocates are critical to enduring continued government research funding!
Sincerely,
Justin Ichida, Ph.D.
Assistant Professor
Department of Stem Cell Biology
University of Southern California
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=44639&srctid=1&erid=10872905&trid=c404ab6f-dab3-4773-b0f6-bb5ff2f8ab6a>.

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