Howdy from Fort Worth...
A year ago, I was healthy and active and looking forward to life as an empty nester. Today I can no longer speak, I only eat via a feeding tube, can barely use my arms and hands, and frequent the ER regularly after nasty falls. Bulbar onset ALS is my new reality. There is no treatment or cure. It's a death sentence, and I have about a year left before respiratory failure takes me.
While there is no treatment available now, there are several very promising ones on the horizon that have proven to be safe but are bogged down in the lengthy and bureaucratic clinical trial process. The petition below is requesting access to these treatments under Right to Try. Those of us afflicted with this disease are facing certain death and have absolutely nothing to lose. But we need your voice.
Please take a moment to sign.
Thanks and Gig 'Em
Kyle Blake '91
Dad '54
Brother '89
Better Half '91
Daughter '21
https://petitions.whitehouse.gov/petition/als-immediately-force-fda-immediately-start-granting-right-try-approvals-potential-drugs-treat-als?fbclid=IwAR03iPeGQk28_OwPzCV0PGSbkKpe8yOnTsvxkIS3EUTMF-cZ8K58UAnhSGM
And here is a FOX story on the petition...
https://www.fox23.com/news/fox23-investigates/fox23-investigates-local-man-petitions-for-right-to-try-als-drug/922157753?fbclid=IwAR0sMdL2ktSreCZAZKnkwmtI2x_35-0e-vo1QwvUsB2VwI-NlpEqP1cekXA
A year ago, I was healthy and active and looking forward to life as an empty nester. Today I can no longer speak, I only eat via a feeding tube, can barely use my arms and hands, and frequent the ER regularly after nasty falls. Bulbar onset ALS is my new reality. There is no treatment or cure. It's a death sentence, and I have about a year left before respiratory failure takes me.
While there is no treatment available now, there are several very promising ones on the horizon that have proven to be safe but are bogged down in the lengthy and bureaucratic clinical trial process. The petition below is requesting access to these treatments under Right to Try. Those of us afflicted with this disease are facing certain death and have absolutely nothing to lose. But we need your voice.
Please take a moment to sign.
Thanks and Gig 'Em
Kyle Blake '91
Dad '54
Brother '89
Better Half '91
Daughter '21
https://petitions.whitehouse.gov/petition/als-immediately-force-fda-immediately-start-granting-right-try-approvals-potential-drugs-treat-als?fbclid=IwAR03iPeGQk28_OwPzCV0PGSbkKpe8yOnTsvxkIS3EUTMF-cZ8K58UAnhSGM
And here is a FOX story on the petition...
https://www.fox23.com/news/fox23-investigates/fox23-investigates-local-man-petitions-for-right-to-try-als-drug/922157753?fbclid=IwAR0sMdL2ktSreCZAZKnkwmtI2x_35-0e-vo1QwvUsB2VwI-NlpEqP1cekXA