collaborate on the creation of a fatigue factsheet

There is no factsheet accessible on the web that details fatigue in students with NMD. Moms could really use a fact sheet when dealing with schools for IEPs and for explaining to teachers about NMD fatigue. I spoke with a NMD physiotherapist last week and she agreed to let me support her in its creation. The first step is to send her everything I have gathered from other moms about fatigue in their NMD kids. The second is to meet her and have her tell me what she knows. Third step is for me to write a fact sheet. Fourth step is for her to work with me until it is ready for publication. Fifth step is to get her to have it recognized by the institution she works for. Final step is to get it posted on the website or on MDA and MDC websites. Normally, I’m just focussing on my kids and their needs so I am really wanting to do something that serves the bigger community and helps me out as well.