Roel Pasetes - Founder & CEO, Nifty Campaigns, Inc.

Roel shares insights on crowdfunding, fundraising, and NFC wearable technologies.

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ALS Ice Bucket Challenge Was Totally Worth It!

Posted by on in Non-Profit News
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ALS Ice Bucket Challenge Was Totally Worth It!
Remember way back in 2014 when everyone seemed to be dumping buckets of ice water on their heads and challenged others to do the same all to raise money for ALS?
Today, we received news that it was totally worth it!
ALS, also known as Lou Gehrig's disease stands for Amyotrophic Lateral Sclerosis.  It is a specific type of disorder that involves the death of neurons that control voluntary muscles.  Though the initial symptoms of ALS  are subtle and are commonly overlooked,  the progression of its symptoms ever increase to the point where the affected are unable to walk or make use of their hands and arms.  Eventually, they lose control of the ability to swallow food and end up on a ventilator.  Most people will with ALS die of respiratory failure.
To this day, no cure for ALS is known.  Medical management along with physical therapy are used to relieve symptoms and extend life expectancy.  
17 million people did the Ice Bucket Challenge, of those 2.5 million actually donated to ALS for a total amount of $115 million dollars.  Of that $115M total, 77M was allocated to research, $23M was allocated to Patient and Community Services, $10M went to public and professional education, $3M went to fundraising and $2M to processing fees.
Today, it was announced a discovery of a gene.  With the donated money, the ALS foundation was able to invest in Project MinE, a UMass Medical School project that produced the discovery.  The discovered gene, called NEK1 provides another target for therapy development.  This discovery opens up another avenue by which scientists can use to get closer to a treatment for ALS.


Onwards and upwards until the next ALS Ice Bucket Challenge!

He is an incessant ideas generator, and avid pool player and a high energy individual.  He has multiple engineering degrees with over fifteen years in the software industry.  Most of all, he's a dedicated husband, father and follower of Christ.


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Guest Monday, 27 May 2019

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