Articles by author: José Cofiño

Ice Bucket Challenge - A Human Movement for ALS

Ice Bucket Challenge - A Human Movement for ALS
By José Cofiño on Oct 09, 2014 at 12:17 PM in Friends of Beyond ALS

Steve Dezember was diagnosed with ALS in 2011. He and his wife, Hope Cross Dezember have made it their mission to spread awareness about the disease. In this piece, she continues this work.

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ALS TDI Precision Medicine Program - Mapping Genomes & Creating Stem Cell Lines

ALS TDI Precision Medicine Program - Mapping Genomes & Creating Stem Cell Lines
By José Cofiño on Oct 02, 2014 at 12:11 PM in ALS Research

This week, Ben and I travelled to Cambridge to enter the ALS TDI Precision Medicine Program (PMP) to help find treatments for ALS. Participating in this research is an honor. As we flew back to CA, this is what went through my mind.

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MIT Heywood Family Reshapes ALS Research

MIT Heywood Family Reshapes ALS Research
By José Cofiño on Sep 17, 2014 at 12:45 PM in ALS Research

Professor John Heywood SM ’62, PhD ’65 and his two sons, Jamie ‘91 and Ben ’93, have used MIT thinking — in particular, systems dynamics and manufacturing management — to transform research models after losing a family member to ALS.

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Franchise Times - Franchising takes the Ice Bucket Challenge

Franchise Times - Franchising takes the Ice Bucket Challenge
By José Cofiño on Sep 09, 2014 at 12:27 PM in Friends of Beyond ALS

Franchising embraced the ALS Ice Bucket Challenge, and although the videos on Facebook of various franchise executives dumping a bucket of ice water over their heads didn’t have the page views as the celebrities, such as Mark Zuckerberg and Governor Chris Christie, there were no shortage of franchise challenges.

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Ice Bucket Challenge Fades - Living With ALS Challenges Goes On

Ice Bucket Challenge Fades - Living With ALS Challenges Goes On
By José Cofiño on Sep 03, 2014 at 01:57 PM in Overcoming Adversity

As the ALS Ice Bucket Challenge winds down, please remember that for those of us living with ALS, the challenge continues.

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Ice Bucket Challenge Expedites ALS TDI Drug Trial

Ice Bucket Challenge Expedites ALS TDI Drug Trial
By José Cofiño on Aug 29, 2014 at 04:53 PM in Friends of Beyond ALS

Dr. Steve Perrin, CEO of the Massachusetts-based ALS Therapy Development Institute (ALS-TDI) research organization said donations from the Ice Bucket Challenge are responsible for expediting the timeline of a clinical drug trial by two years.

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ALS Association - Slow to Invest Ice Bucket Challenge Dollars in Research

ALS Association  - Slow to Invest Ice Bucket Challenge Dollars in Research
By José Cofiño on Aug 25, 2014 at 02:39 PM in Overcoming Adversity

In recent articles, (Fortune.com) and interviews (PBS NewsHour), the leadership of ALSA have made it clear that their organization's mission includes other matters such as advocacy and patient support and that they will take time to ensure the dollars are spent wisely. Why delay?

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ALS Ice Bucket Challenge - Gay Couple Reveals Living With ALS

ALS Ice Bucket Challenge - Gay Couple Reveals Living With ALS
By José Cofiño on Aug 22, 2014 at 04:27 PM in Overcoming Adversity

My partner of 16 years, Ben Trust and I figured we would live a long life together. We were both healthy, regulars at the gym, and also loved to hike. We ate the right things and used sunscreen. As with many in the gay community, the way we looked was important. Then, slowly, I began to have cramping in my legs and abs, and twitching in my arms and legs. I thought nothing of it until after two days of hiking and bike riding, I collapsed when I got off my bike.

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Augie's Quest Tradition of Hope Gala

Augie's Quest Tradition of Hope Gala
By José Cofiño on Aug 20, 2014 at 10:39 AM in Friends of Beyond ALS

I am honored to be this year’s recipient of the Augie’s Quest Tradition of Hope Courage Award “given to an individual who exemplifies courage in the face of Adversity. A person who uses their spirit and zest for life to turn misfortune into a beacon of hope”. I can only hope to live up to this ideal, and for a long time.

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Forbes Norris ALS Clinic Visit - A Progressing Disease

Forbes Norris ALS Clinic Visit - A Progressing Disease
By José Cofiño on Aug 08, 2014 at 09:50 AM in General Health

Monday of this week was a good day; A very good day, indeed. Ben and I travelled to the Forbes-Norris Clinic for my periodic check-up. The clinic is named after Forbes (Ted) Norris, a renowned neurologist who dedicated his life to helping people with ALS.

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