NAF Meeting 2013 Detroit  Anna on her 9th Birthday

Doctors - Ataxia and FA Training Return to Index

One of the Friedreich's Ataxian parent's roles/responsibility/opportunity/curse is to communicate with doctors unfamiliar with FA. The parent may not realize it but they also have the role/responsibility/ opportunity/curse to train the doctor. Wow, wasn't the doctor trained in med school?? The answer is no, not about a rare disorder like FA. At best they had a brief overview; one of many I'm sure.

So the parent gets to help bring the doctor up to speed. Whether it is the issue of over hydrating in that hospital drip bottle, giving too much anesthetic, or when is a FA heart attack not a heart attack, the parent needs to be there for the doctor, and for their FAer.

Below are video, audio and PowerPoint media educational materials for your doctor. The subject matter runs the gamut of ataxian concerns. I encourage you to offer these resources to your doctors and to require confirmation that they have spent quality time going through them. You could help your doctor, say a cardiologist, by going through the list yourself and pulling out all the heart presentations for them.

NAF Conference:

2013 Annual Membership Meeting
2012 Annual Membership Meeting
2011 Annual Membership Meeting
2010 Annual Membership Meeting
2009 Annual Membership Meeting
2008 Annual Membership Meeting
2007 Annual Membership Meeting

CHOP Symposium:

Friedreich's Ataxia Symposium
FA Symposium Archive - Videos of Previous Events

NAF Conference Parents' Meeting:

2013 Meeting
2012 Meeting

Surgery Concerns:

Pre-Surgery Discussion with Doctor for FA Patients

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