Hello Friends,

I hope that you are all doing well!  A few years ago, we had the Ice Bucket Challenge which created worldwide awareness for ALS and raised $77M towards ALS research. So much has been discovered; however, we do not have a cause or cure still. The past 2 years have brought incredible advancements in ALS research, expanded access to people living with ALS, and enabled legislation that impacts their quality of life. 

If you don't know about ALS, it is a progressive, fatal neuromuscular disease that robs the body of its ability to walk, speak, swallow and breathe. Most people live 2-5 years; and it can strike anyone (young, old, healthy, etc). 

As many of you know, my dad was diagnosed with ALS in December 2015 (passed in Aug 2017).  Our lives dramatically changed because his decline was rapid and changed weekly. This disease is truly a race against time because you have to maintain patient health, wait for insurance and medical appointments, prepare for the next month's needs. The list of to do's is endless and always growing for families and patients. 

You navigate the unknown and it's overwhelming. The ALS Organization, especially the OC Chapter, has been instrumental for 250+ families at any given point, including mine -- support, equipment, resources, ideas, and always being available. This is why I continue to give back, bring help and hope to patients and families, and build awareness in the community. 

With help from people like you, we will be able to make a difference in the lives of people affected by this disease. Thank you all.  God bless,

Bonnie