Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Monday, September 1, 2014

Ice Bucket Challenge is for ALS

Recently there has been an amazing viral challenge all over Facebook and the Internet.  Millions have been raised for ALS (amyotrophic lateral sclerosis) with the ALS Challenge and many have been educated about this devastating disease that has no known cure, no known prevention and very little research.  It is also a rare disease, just as congenital diaphragmatic hernia.  Though more are affected by CDH than ALS – we commend them as a rare disease organization for this campaign and hope it not only brings more funding now but in the future too!  We also hope many will step forward and volunteer their time or services too! We also hope answers are found in research! 

Though the ALS Foundation has also had some microscope their financials – we would encourage you to look at the fact that only 7% of their funding ending in January 2014 was for Administration costs.  The goal most nonprofits should make is 25% or less for Administrative costs.  This means that 93% of their revenue went to their programs to help education, support and for medical research.  That is awesome!  

This said, Breath of Hope would encourage anyone who does the “Ice Bucket Challenge” to donate to the ASL Foundation.  This is not our campaign and we refuse to ride on the coattails of another charity while their campaign is in full swing.  That is infringement.  It is just not ethical in any way, shape or form.  We have worked hard with our original ideas too and understand how it is to be the charity with this original campaign – that went viral – and others infringe upon it and create new days or new twists to benefit their charity.  Again, it is unethical.  We have never done this and refuse to infringe on others doing so borderlines corporate fraud.  (We know that is a strong accusation but if you can’t come up with your own campaigns and piggy back off of others, that is exactly what it is!) 

We are working on a campaign for March which will also involve social media – stay tuned!  It will have a different twist – an ORIGINAL twist and we hope to raise awareness of CDH the way the ALS Foundation has raised awareness for ALS! 
Thank you! 

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