A diagnosis of a terminal illness sends your life into a whirling dervish. The dreaded statement, “There is nothing we can do. Get your affairs in order. ” typically follows. We are often left with a thousand questions swirling in our heads. Not much in the way of guidance, to boot. So, today, I just wanted to share some of the resources that I like. Many may be familiar, but to those who are new to ALS life, it could be helpful.
There are numerous organizations conducting research to find a cure for ALS. One of my favorites is the ALS Therapy Development Institute, or ALSTDI. This organization was created in a family’s basement with the sole purpose of finding a cure for ALS. Needless to say, they have come a long way and now run a state of the art lab in Cambridge, Massachusetts. I had the great honor of being able to tour the facility in 2017. I even got to see the therapeutic that they just announced would be going to clinical trial , AT-1501. Really exciting stuff! I urge you to take a look at their website. Others who are helping to lead the charge are Project ALS, Answer ALS, Augie’s Quest and a slew of many more.
When it comes to advocacy and assistance, Team Gleason, is tops on my list ! Steve Gleason, former NFL player with the New Orleans Saints, founded this organization after being diagnosed with ALS. Team Gleason has its hands in numerous baskets pertaining to ALS. From advocacy and awareness to assistance in obtaining necessary equipment to live with ALS, these guys are movers and shakers. They are always pushing the envelope with forward thinking. If you have ALS or are a caregiver for someone with ALS, and are in need of assistance acquiring equipment or services , seek them out. Your local chapter of the ALS Association can also be a viable resource.
When it comes to practical and personal information , social media such as Facebook and internet forums can provide a quick and easy answer. There are many group pages on Facebook which are tailored to either pALS, cALS or both. There are also groups for veterans with ALS. Online forums which I have found useful include ALS Forum and Patients Like Me . On these pages and sites , you can engage in conversation or research answers to questions you may have. Who better to ask than the “experts” living with ALS 24/7? I have found these communities to be filled with helpful and knowledgeable people eager to lend a hand.
ALS can be a very isolating disease. But just know that you are not alone and help is not out of reach. I wish I could think of every resource I have learned of. There are so many and these are only a few from here in the US. I hope that worldwide , you can seek out and share the resources available to you !