Advocacy
What is Advocacy?
The act of Pleading for, Supporting or Recommending
Advocating is knowing what you believe in, knowing what is right and fighting for that. It is not taking over medical treatment but finding the best and most comfortable path and making sure all are clear on the purpose and the intended result.
Know your rights, Know what you want and Don't back down!
You are your own best advocate!
Organizing your Records
Medical binder -
CHOP has a great resource so there is no reason to re-create it. The best advice is everyone has a different way of organizing information. The only important thing is to make it easy for you to find again.
Sample Surgery Protocol Let
Sample Emergency Protocol Letter
Medicines to Avoid
*Consult your doctor, this is just what we use.
Blogs
School Actions
Mito Action: Children with Mito can Attend School - http://www.mitoaction.org/education-overview
