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Tips for Newly Diagnosed
Have you noticed that our membership has remained steady during the pandemic? However, we have not had new member registering the past several weeks. That’s understandable since clinics are closed, and fewer people are able to follow up with new diagnoses, start treatments or participate in clinical trials. I would imagine that many people who were in the process of testing and those who are starting the process once the pandemic restrictions are lifted, will have many many questions! Living through a pandemic or going through the process of being diagnosed are stressful individually, but to have to be concerned with both at the same time is unthinkable. I expect that when things start to open, and clinics start seeing patients and new pALS are diagnosed, we could offer a great deal of information and support. In honor of ALS Awareness month, I thought we could post resources, tips and ideas for new members. It would be a thread of information, tips, suggestions that they could read through and ask questions. You can post your information about local organizations or national organizations and what supports they provide. You can list clinical trials or ALS clinics that you would recommend. You can recommend books or articles that helped. You can post anything that you think would be educational or helpful to new members!!
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