José, Ben and Life Today - Blog

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

ALS TDI Precision Medicine Program - Mapping Genomes & Creating Stem Cell Lines
By Jos Cofio 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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Pat Quinn, Catalyst of ALS Ice Bucket Challenge, on going Beyond ALS

Pat Quinn, Catalyst of ALS Ice Bucket Challenge, on going Beyond ALS
By Pat Quinn on Sep 30, 2014 at 09:35 AM in Overcoming Adversity

I can't raise my arms - dressing, eating and showering have become impossible. Yet, I am very positive. Yes I am!

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ALS SUPPORT GROUPS: Family, Friends, Strangers and You

ALS SUPPORT GROUPS: Family, Friends, Strangers and You
By Jenny Gore Dwyer on Sep 24, 2014 at 08:18 PM in Overcoming Adversity

You can't do ALS alone. I know there are families facing ALS without any support. And I know how lucky I am: there are 10 Gore Girls that have each others back. It is an incredible support group. It is only one part of the support I have and must pass on.

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MIT Heywood Family Reshapes ALS Research

MIT Heywood Family Reshapes ALS Research
By Jos Cofio 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 Jos Cofio 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 didnt 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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Augie Nieto's top ten reasons why it is good to have ALS

Augie Nieto's top ten reasons why it is good to have ALS
By Augie Nieto on Sep 09, 2014 at 09:47 AM in Overcoming Adversity

When we asked for his thoughts about ALS, Augie Nieto, who has been living with ALS for over nine years, teaches us it's good to laugh at it.

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Going Beyond ALS A Loving Journey

Going Beyond ALS  A Loving Journey
By Jenny Gore Dwyer on Sep 05, 2014 at 08:27 AM in Overcoming Adversity

As I sit here thinking about what I want to write, however, the only thing that keeps popping into my head is my handsome husband, Pat. I really can't write about life with ALS, or life Beyond ALS, without first talking about him.

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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 Jos Cofio 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 Jos Cofio 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 Jos Cofio 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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