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.
I can't raise my arms - dressing, eating and showering have become impossible. Yet, I am very positive. Yes I am!
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 other�s back. It is an incredible support group. It is only one part of the support I have and must pass on.
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.
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.
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.
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.
As the ALS Ice Bucket Challenge winds down, please remember that for those of us living with ALS, the challenge continues.
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.
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?
