“Who knew that all we needed was a bucket and a bag of ice to create all the awareness we ever needed.” – John Frates on ABC News (pictured to the right on the left, with sons Pete and Andrew to his right)

It has been truly amazing to watch the success of the #icebucketchallenge / #ALSicebucketchallenge in raising awareness of ALS.  I honestly cannot think of something that has brought more attention so rapidly to those diagnosed with ALS here in the US and across the world.  As John said, who would have thought that this is all it would take.  Thank you to the Frates family and the Quinn family for kicking this off, and to the what must now be thousands of people that have taken the challenge.
 
Our challenge now is to put the funds raised through this to work quickly and efficiently at the ALS Therapy Development Institute.  If you are reading this, you likely know who we are and what we do, and I am proud to say that we continue to be the most efficient ALS research organization in the world (click to view our CharityNavigator.com rating and report) – investing more than 87 cents of every dollar donated directly into our mission, rather than back into fundraising or administrative work.  No other ALS organization in the world, that I am aware of, can claim that they invest more directly into drug development.
 
The #icebucketchallenge has raised not only a significant amount of ALS awareness, but it has also raised a lot of money.  One of the values we have at ALS TDI is transparency, and I feel that this awareness and attention allows us to highlight that by telling you exactly where the additional funds raised will go.  It just so happens that yesterday we announced a new sample collection effort as part of our precision medicine program.  This effort will enroll up to 100 people living with ALS.  After rigorous screening, we will partner with these brave individuals on an exciting endeavor that will include sequencing their genomes, profiling their clinical history, and creating induced pluripotent stem cells from skin samples collected from them in the clinic.  On top of this, we are adding an effort to collect movement data from PALS through the use of accelerometers coupled with regularly reported ALSFRS-R evaluations done by the PALS themselves and entered online through a special portal we have set up for this program.  Throughout the entire process, PALS will be involved and will have access to information and data produced as a result of this important work.  The goal of precision medicine is to determine clinical and molecular subgroups of ALS patients and use that information to develop and execute clinical trials specifically targeting those subgroups of PALS. The funds required to create the iPS line, sequence the patient’s genome, and track all the data will be tens of thousands of dollars per patient.  Every dollar helps, so for those that would like to,  please go to www.als.net/donate and indicate you are donating to the Precision Medicine Program and/or in honor of a specific PALS, such as Pete or Pat.
 
Talking about them, here on this page I have put a couple of photos, one of Pat Quinn (pictured here his wedding to his incredible wife Jenn) @PQuinnfortheWin) (thank you Pat for being the one to start this whole thing!) and another of Pete Frates (@TeamFrateTrain).  I have had the true honor of spending time with each of these young men and their families.  I remember meeting them very soon after they were diagnosed with ALS.  Thank you Pat and Pete for your support and belief in the work we do here at ALS TDI. We are grateful benefactors of many first time donors as a result of the #icebucketchallenge and promise to continue to hold ourselves to the highest standards scientifically and to our community.
 
One final thing – for those of you that do not know, Pete was recognized in 2012 with the Stephen Heywood Patients Today Leadership Award.  This award is given annually by ALS TDI at our Leadership Summit.  The Leadership Awards, including the Heywood Award, are given to individuals chosen by the ALS community.  I encourage folks to take a moment to think of those who deserve recognition this year and let us know about it on our Facebook page.
 
Sincerely, 
Steve
 
Steve Perrin, Ph.D.
CEO & CSO 
ALS Therapy Development Institute
 
PS: I am sure there are a great deal of videos that I haven’t seen! If you have a link to an #icebucketchallenge video that you would like to share with me, please email it to me at perrin@als.net.  This community effort has been amazing and inspiring. I know that we feel as a community much bigger now thanks to the support from so many who previously may not have known about ALS or knew how to get involved.  The #icebucketchallenge is not about ALS TDI, it is about each person that took a moment to accpet the challenge and nominated others to spread the word.  So, if you haven't done it already, I challenge you! Spread the word, raise awareness, end ALS.