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A drop in the bucket – I got an email yesterday from a precious lady that simply said, “what is this I hear about a gene being found that is responsible for ALS?” Later on in the day I was tagged by some of my Facebook friends talking about some new things going on in the world of ALS. I received two phone calls in the afternoon, one to let me know one of my sweet friends had passed away with ALS. While the other phone call was from a gentleman thanking me for helping his wife with some transportation equipment as she has ALS.

Today I received a phone call from a nice lady who was crying and saying her brother had just been diagnosed with ALS and she just has no idea what to do. I called a gentleman and got to celebrate with him that his powerchair is “just perfect” and he could now go outside. He was trapped inside his own home because he has ALS. I called the wife of a man living with ALS and cried with her as she feels that she is losing bits and pieces of her husband on a daily basis.

Have you ever just been mad? Well, I am mad! I hate ALS! I hate feeling helpless. I hate that there is little I can do to help. I hate that great people die from ALS. I hate that we do not know the cause of ALS and that we have very limited treatment for ALS.

How can I turn this anger into something helpful? Remember the ice bucket challenge? Now, that was something helpful. Over 100 million dollars raised going to fund research to find a cause and cure for this horrible disease. This was really just a huge drop in the bucket. There needs to be many, many more drops in the ALS bucket!

I am blessed to live in the Upstate of South Carolina. The giving community here has allowed Prisma Health to start an ALS clinic and graciously allowed me to be hired. You see, I am the nurse practitioner/nurse navigator for our ALS clinic. I am a very small part of the big team serving families living with ALS. We began more than 9 years ago with two patients, and now serve approximately 125 families living with ALS.

Out of this clinic, the need for more to be done was birthed. In 2022 people in our community heard the cry and started a community group called Touched By ALS. What an amazing day. I have the great honor of being a part of this group. I am filled with gratitude that a group of people came to gather to help people and their families living with ALS.

I write this to let you know that every drop counts!! Please consider helping this group either through time, financially, or getting the word out. I cannot wait until the bucket I see everyday is overflowing and the needs of these precious people can be met.

With much love,
Suzy Hobbs