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    • #13837
      Amanda
      Keymaster

      We have a great membership here and I feel like I’m getting to know (or have gotten to know) many of you. Sometimes I forget that this “small community” is made up of people from around the world. We all have some kind of connection to ALS and we all want a cure! Here are a few tips to enhance using our forums and cultivating a safe place for all of us to ask questions, show/give support and to share information:

      -Be sure to follow the forum guidelines.

      -Each member has a profile and they have shared some important details about themselves and thier connection with ALS. If you are curious about someone’s post or question, you may want to take a look at their profile. That might help you get to know the other member and see things from the other members’ perspective. Some of our members live in areas that don’t have  ALS research/clinical trials or specialists. Other members are part of clinical trials or have a significant family history of ALS.

      -You are welcomed to email private messages to the forum moderators or one another.

      -Ask for help if you need it. Sometimes members are not comfortable posting a specific question or topic. Dagmar and myself are always happy to help. If you are curious about something, I’m sure it has crossed other members minds too! We want to help generate a useful dialog between our members.

      -Be active and feel free to respond to other’s posts, comments or questions. We are all here to support each other.

      -Share updates about your (or your pALS) progress if you are comfortable sharing that information. We learn about treatments and things we can do to improve pALS and caregivers quality of life from sharing.

      -Share information about ALS Advocacy, News, ALS in the media, fundraisers and support groups. The more information we share the better!

      -Be nice to the forum moderators 😉  We are trying to keep the information relevant, and useful. We do our best to research topics that we see posted and to provide useful links and information. We do get a lot of technical support from ALS News Today, but we work with our team to try and keep informed about topics related to ALS. We also depend on our members to help us stay up to date and informed. You are VERY IMPORTANT to the ALS Forum community! Basically, YOU are the most important part of the forum!! You are why we are here.

      -We are all here because ALS has impacted our life in some way. Some are pALS, some are caregivers, some are medical professionals, some have lost loved ones to ALS, our list is endless. Many of us are on an emotional roller coaster at times, understandably. Please be considerate and supportive. All of our lives have been touched by ALS and together we are stronger!

      -If you are well educated about a specific aspect or treatment for ALS, please share!  As I said, we all have a connection with ALS. Dagmar’s column and posts often focus on how to live a healthy  (Living Well with ALS) and staying positive. (She is amazing in my opinion!).  My family has a significant history of ALS (We’ve lost at least 15 people to ALS) and I have the mutated SOD1 gene. I  am actively involved with ALS research as a participant (I’m a lab rat :)). We have members that are involved with the ALS Association and help to raise awareness and funds.  We have caregivers that can share important tips and resources for other caregivers! Please share!! With that being said, please remember to accurately represent yourself and your basis of knowledge. 

      Cheers and thank you for being part of this Awesome community!

      Amanda

      • This topic was modified 1 year, 10 months ago by Amanda.
      • This topic was modified 1 year, 10 months ago by Amanda.
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