Greeting
Hello...
On behalf of the MitoCHAMP Task Force, we'd like to thank you for taking this survey. We are burdened by the number of false allegations within the Mito community and are taking bold and swift steps to design programs to combat it.
You are a big part of this effort! Our first step in all of this is collecting data to bring to professionals who want to see in black and white what these allegations do to families.
If you've been in this community for very long, or spent a long time without a diagnosis, you have probably met someone who has been through a Munchausen's allegation. This survey will address your fear over being reported and/or any informal accusations that might have come from professionals or family members not believing the reality of your child's medical situation.
Regarding the survey: The questions are comprehensive and cover many scenarios and areas of your life that have been changed by this experience. FOR THIS REASON, please make sure you have plenty of time to sit and answer this as thoroughly as possible, At least half of the questions are multiple choice and some are open-ended. We'd love for you to respond to every questions, and just put N/A if it does not apply to you. ATTENTION: Metabolic families, please note if any questions just say "Mito" they refer to you too.
Remember, Awareness is Energy and that starts by people understanding your experience. You are changing lives just by taking this simple survey.
Thank you!
The MitoCHAMP team
One more thing...if you were formally accused (meaning a referral was made to CPS), the formal allegation survey will address the issues here. While you are welcome to fill this one out too if you feel it would give additional information to us, please fill out the other survey before you decide.