Ann (and anyone else):

Please know that there are many others out there in the same boat. We have a little girl w/Mito (likely complex I) and have become active with the Mitochondrial Disease Action Committee www.mitoaction.org. This non profit hopes to empower parents, caregivers, patients and clinicians w/concrete tools and is on its way to a whole new website, set of tools, etc.

Also, check out the UMDF www.umdf.org, the MDA www.mdausa.org and other related organizations listed in the various links sections.

Lastly, there is a Yahoo group for mito at mito@yahoogroups.com .

Wishing you luck and strength -- Susan Zelenko www.mitoaction.org