Le Lézard
Classified in: Health
Subjects: DIS, FVT

ALS Activist Group To Hold Protest And Media Briefing On New Therapies


WASHINGTON, June 5, 2019 /PRNewswire/ -- The ALS (Lou Gherig's Disease) activist group "Contagious for A Cure" is hosting "No More Excuses!", an ALS action event on June 12 and 13 in Silver Springs, MD. The event will feature a media presentation where it will offer a strategy to begin treating ALS sooner than currently projected by utilizing three promising new therapies.

"No More Excuses!" will also hold two large rallies, at the headquarters' of the FDA and ALSA (ALS Association). Many in the ALS community are angry about a perceived lack of urgency and strategy since the historic windfall from the "Ice Bucket Challenge" occurred, when ALSA received over $200M in donations during 2014-15.

The three promising ALS therapies which will be discussed include: NurOwn, CuATSM, and a promising procedure developed by notable ALS researcher, Dr. Stanley J. Appel, that uses "T-regulator" cells to halt the progression of ALS symptoms. Group representatives will also meet directly with the FDA, members of Congress, the media, and will ask President Trump to use executive action to intervene in the desperate battle to allow ALS patients to gain immediate access to these promising new treatments. In legitimate clinical trials, these three therapies demonstrated an ability to slow, halt, or slightly reverse the symptoms of the devastating motor neuron disease, but they are currently bogged down in inhumane "placebo" trials and will likely not be available for several more years- unless urgent action is taken now.

Guests scheduled to appear at the event include former Navy pilot and ALS warrior Matt Bellina, his mother Debbie (a notable "Right to Try advocate"), and Mark Bedwell. Mr. Bedwell and Mr. Bellina have both successfully completed the "NurOwn" procedure and have demonstrated medically significant improvements in their motor skills and/or breathing capacity. A detailed explanation of these three therapies by Mike Henson and the group's medical adviser, Dr. Randall Latorre, will occur at 2:30PM on the 12th, followed by a "Right to Try" discussion by Debbie Bellina.

The media event starts at 2:30PM on the 12th at the Hilton Honors at 1701 Elton Road in Silver Spring, MD and will be streamed live at the Youtube link below. The rallies will be held onsite at both the FDA on Wednesday at 10AM, and at ALSA national HQ on Thursday at 10AM."

Contacts: Mike Henson, Craig Reagan
Facebook: https://www.facebook.com/curealsneuodegenitivediseases/ 
Twitter: @ALS_NOW
Youtube: https://www.youtube.com/c/ALSNEWSNOW 
Email: [email protected], [email protected]

 

SOURCE Contagious for A Cure


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