Processing a devastating diagnosis like ALS can be an isolating experience for both people living with the disease and their caregivers. There are many resources out there – from medical clinics to nonprofit patient services organizations to research labs like the ALS Therapy Development Institute (ALS TDI). However, the sheer amount of information available can be overwhelming, and often hard to find all in one place.
For many, the best way to learn about life with ALS is to connect with others who are also dealing with it – the people who really understand what they are going through. To help people find the support they need, Brooke Eby, who is living with ALS, and a team from her employer, Salesforce, have created a new online resource: ALStogether.
“People with ALS have to adapt at the speed of ALS,” said Brooke in a video announcing ALStogether’s launch. “Having instant access to other people going through this disease can make a big difference… I brought this problem to my executive team at Salesforce… They gave me an entire team of people to build out this vision.”
ALStogether is an online community that allows people dealing with the disease to share resources, ask questions, and connect with others in similar situations. It’s hostedthrough Slack, a popular workplace communication app that operates much like a group text or chat room. People with ALS or those caring for someone with the disease can request an invitation through the ALStogether website. With this invite, they can create an account on the Slack app, which is available for smartphones, tablets, or desktop computers. On mobile, the app is Eyegaze friendly, and there is an Eyegaze mode for desktop.
The group offers dedicated channels for groups and topics such as:
- Veterans with ALS
- People with ALS under 40
- Women with ALS
- Science and ALS research
- Different genetic mutations associated with familial ALS
“The ultimate goal is to have everyone living with ALS across the globe in this Slack community,” said Brooke. “And eventually we will open this up to families and ALS organizations.”
To learn more about ALStogether and sign up, click here.
