Subject: Remembering Sonal Shah
From: "Tony Heyl, Director, Communications and Public Policy" <[email-masked]>
To: "R Biden" <[email-masked]>
Date: Sun, 01 May 2016 10:04:59 -0400

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These inspirational words were Sonal Shah’s battle cry in the fight against the disease that took her life on November 28, 2015. Mrs. Shah valiantly battled ALS for three years, leaving behind a legacy we can all learn from.
Mrs. Shah didn’t let progressive weakness and dysarthria slow her down. Instead, the Shah family, led by Mrs. Shah herself, have been exemplary ALS advocates, overcoming challenges the disease presents to spread ALS awareness throughout the country. A very inspiring testament to the Sonal’s dedication, she and her family routinely attended The ALS Association’s annual ALS Advocacy Day and Public Policy Conference in Washington DC, championing legislative priorities that are important to the entire ALS community.
Last fall, one month before her death, Mrs. Shah’s tenacity garnered the attention of Governor Chris Christie, who in response to Mrs. Shah’s appeals, declared May as ALS Awareness Month in New Jersey.

Nirali Shah, Sonal’s daughter, told us recently, “ALS Awareness Month is a symbol of my mother’s perseverance, and a reminder that no matter what an individual’s circumstances, they can make a profound difference.”
Like Sonal, you can make a difference. This May, become an advocate to help advance critical ALS legislation; connect with your Representatives on Virtual Advocacy Day to urge them to do more for the ALS community; and stay up-to-date about the impact of your dedication to the fight against this disease.
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If you would like to get involved with local ALS advocacy efforts in Pennsylvania, New Jersey and Delaware, email me at [email-masked] <mailto:[email-masked]>.
Thank you,
Tony Heyl
Director, Communications and Public Policy
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=44469&srctid=1&erid=10615035&trid=1e1f29e4-ac27-43ee-b265-cc33520bc013>

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