ALS Resources Page

Finding information on ALS resources and information can be a difficult task, I know it was for me.  Below are some  of my favorite organizations and ALS related sites. I hope this helps.

The ALS Association

I recommend the first organization a person contact after diagnosis is the ALSA, even at the early possible diagnosis stage. At this point they will send you Information about how they can help, and things you can do to help yourself. They will get you in touch with your local ALSA Chapter Coordinator. You can start with a support group then if you like. It’s for pALS and cALS and it can be comforting to many people to talk with others going through what you are. It’s easy to feel like you’re the only person dealing with this, you’re not! Much of the equipment we need is very expensive. They have loaner closets and if your local chapter doesn’t have what you need, they’ll drive miles to get it from another. Right now I have 4 things on loan from them. One thing I’m getting ready to return is a very nice rollator. I keep looking at it thinking I may get a little more use of it. I’ve come to terms that I won’t. Just typing this gives me an urgent feeling to get it in a loaner closet. Somebody right now needs it. It kept me mobile at home and out for many extra months after my cane just wasn’t enough. They have so many resources. Don’t put off getting in touch with them. A lot of local Chapter Coordinators are people who know ALS first hand and have been a sole caregiver or lost a loved one from this disease. Their help is very sincere.

Muscular Dystrophy Association: MDA

I was surprised to learn the Muscular Dystrophy Association (MDA) has an ALS chapter, and of how much fundraising they do for ALS. You will want to get in touch with them right away too. They also have loaner closets of medical equipment, and it’s my understanding they will financially help up to $500.00 for repairs needed on equipment you already have. They won’t give the money to purchase new equipment. Some examples are power wheelchair repairs, or repair of a broken electrical hospital bed that you rely on to lift up or down. Some of these expenses may not seem like a lot initially, but ALS is a very expensive disease and can bankrupt a financially secure family even with great medical insurance very fast. Unless you come from true wealth you’re likely to need all the support you can get. MDA also publishes a quarterly print magazine QUEST. It is ALS specific, very informative and interesting. I always look forward to it.

 

ALS Forums

This is a very active ALS/MND forum for pALS and cALS. If you’re experiencing something new in progression you will almost certainly find it here, and learn how others dealt with it.  Many people make long lasting friendships here.  Most members want nothing more than to share and connect with others but I want to remind people, especially new to forums, it is accessible to anyone including those looking to exploit the vulnerable. I would suggest taking it slow in the beginning and you’ll soon realize what to look out for.  I recommend it as a go-to site to receive helpful advice from others experiencing firsthand what you’re dealing with.

Often Awesome The Series

Often Awesome is about Tim Lafollette who at 29 years old was diagnosed with ALS. He was a musically talented young man full of life when diagnosed. He put his life out there to spread awareness by allowing cameras to follow his progression from the beginning, through loss after cruel loss with his wife and friends by his side until the end. For Tony and I, it was a hard but helpful watch. I recommend this series to everyone. Please watch and share to help spread awareness of this cruel disease, ALS.

The ALS Registry

The National ALS Registry is a congressionally mandated registry. The purpose is to collect information from a large population base to help scientists learn more about ALS and what causes it. I joined and filled out several surveys. You will be notified when there is a new survey or when one needs updating.  There are many benefits to having all this information gathered and I highly recommend and urge anyone with ALS to join the registry. You’re information is kept confidential.  Anyone can open a public account to view resource materials about ALS and The National ALS Registry.

 

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