Sympostium: on the Eve of Amyotrophic Lateral Sclerosis Awareness Month 2019

Before Congress:

Ady Barkan: 5 Fast Facts You Need to Know
Ady Barkan: 5 Fast Facts You Need to Know | Heavy.com

Lawmakers hear from dying man, experts at first-ever Medicare for All hearing
Lawmakers hear from Ady Barkan, experts at first-ever Medicare for All hearing - UPI.com

Video: Ady Barkan shares impact of terminal ALS diagnosis in urging adoption of Medicare for All
Video: Ady Barkan, man dying of ALS, urges adoption of Medicare for All | Boston.com

First Medicare-for-all hearing held on Capitol Hill
Emotional testimony at first congressional hearing on Medicare-for-all proposal - ABC News

3 Big Questions Now That ‘Medicare For All’ Is Getting A Hearing
3 Big Questions Now That 'Medicare For All' Is Getting A Hearing | HuffPost

This Week in History: 4/29/19-5/3/19
http://dailycampus.com/stories/2019/...ory-42919-5319

patient viewpoints:

Family travels by pontoon for Easter celebration
https://www.wahpetondailynews.com/ne...a0e91399b.html

'I want out of this body': Unable to move or talk. But still here. By Rahul Desikan
https://www.thetelegraph.com/news/ar...photo-17302383

After ALS Diagnosis, This Skadden Associate Is Building a Movement Against the Disease
https://www.law.com/americanlawyer/2...20190330132637

I have ALS. I wish a polygenic analysis had told me it was coming
https://www.statnews.com/2019/04/30/...enic-analysis/

Librarians Defeating ALS
https://americanlibrariesmagazine.or...defeating-als/

$838 million Neurosciences Center planned for Yale’s St. Raphael campus in New Haven
https://www.nhregister.com/news/arti...t-13804519.php

research NOW:

from the Amyotrophic Lateral Sclerosis Association:

Studying Epigenetic Changes Could Lead to New ALS Treatments and Biomarkers, Researchers Suggest
https://alsnewstoday.com/2019/04/29/...chers-suggest/

Changing TDP-43’s Structure Can Halt Neurodegeneration in ALS and FTD, Study Finds
https://alsnewstoday.com/2019/04/30/...n-als-and-ftd/

from the American Neurological Association:

ANA Highlights ALS and Huntington’s disease research in recent issues of Annals of Neurology and Annals of Clinical and Translational Neurology
https://www.newswise.com/articles/an...onal-neurology

American Neurological Association highlights ALS and Huntington's disease research
https://www.mdlinx.com/neurology/top.../04/29/7565498

Sample press releases from corporate research labs:

CytRx Corporation Highlights Enrollment Completion in Phase 2/3 Clinical Trial of Sporadic Inclusion Body Myositis Conducted by Arimoclomol Licensee Orphazyme A/S
https://finance.yahoo.com/news/cytrx...130000378.html

Voyager Therapeutics Set to Present New Preclinical Data
https://investingnews.com/daily/life...clinical-data/

AB Science reports today its annual financials as of 31 December 2018 and provides an update on its activities
https://www.globenewswire.com/news-r...ctivities.html

FUND RAISING:

Staten Island man donating his prized Yankees memorabilia in honor of his grandfather
https://www.silive.com/sports/2019/0...andfather.html

Purdue University Freshman/Lawrenceburg High School alumni to host car show for ALS Sunday, May 5th
https://wrbiradio.com/2019/04/30/pur...unday-may-5th/

Muscular Dystrophy Association Launches Multi-Faceted ALS Awareness & Fundraising Campaign Leading the Way for Life-Saving ALS Research & Care
https://finance.yahoo.com/news/muscu...173100809.html

Power Wheel Chair Research and Development

INNOVATION: Revolutionary eye-control system for powerchairs enters US market
https://thiis.co.uk/innovation-revol...ers-us-market/

Clever eye-controlled wheelchair system launches for people with neuromuscular diseases
http://attoday.co.uk/clever-eye-cont...ular-diseases/

[Iowa] Considers Expanded Medical Marijuana Bill
http://www.swiowanewssource.com/atla...c5d44df62.html

Be prepared: read all of the above stories and you will understand the amyotrophic lateral sclerosis syndrome far better than the average person and become more capable of constructive involvement. This ALS awareness month may prove to be the greatest awareness event for amyotrophic lateral sclerosis patients since the Ice Bucket Challenge. I do not think it will be as big as the Ice Bucket Challenge though.

I sorta moshed als awareness month with 'family' awareness month . . . with the idea being mother's day through father's day as als family awareness month . . . of course you do not need to have a family to get als . . . may yours have been like this:
may someone have been like this for you:

may we see you again next year



may (not fall) find you surviving
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happy summer.