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Here is information that I learned the hard
way!
FOR RESEARCH and SUPPORT:
WATCH THE VIDEOS!!! http://www.umdf.org/site/c.dnJEKLNqFoG/b.3820877/
http://www.umdf.org
for mito information, resources, fundraising, and conferences
OR call 1(888)317-UMDF.
http://www.charitynavigator.org
for info on charities. BE SMART! Check them out before you
write the check!
http://www.mitoresearch.org
for the Mitochondria Research Society.
http://www.mitosoc.org
for the Mitochondrial Medicine Society (and the diagnosis
toolkit).
FOR SUPPORT:
http://www.yahoo.com
for information on joining the mito support group. There are
also groups for feeding problems, hypotonia, and more.
http://www.mitoaction.org
for mito information and resources.
http://www.acor.org/ped-onc/resources/airlineflights.html
for discount information on flying for medical reasons.
I also have an OT and SLP article I can email you if you want
it.
OTHER:
http://www.soulumination.org/home.html
for information on getting your sick child photographed.
http://www.savebabies.org
for information on newborn screening that could detect some
mito diseases
http://www.fodsupport.org
for information on the fatty oxidation disorders.
http://zevex.com/enteral/pumps/infinity/
for THE BEST pump information (in my opinion).
http://www.edisonpharma.com/technology/science/
to read about a company trying to produce meds for mitochondrial
diseases.
http://www.mattieonline.com
to read about an incredible child who lived with mitochondrial
myopathy.
Special shoes for special needs (children's orthopedic
footwear):
www.hatchbacksfootwear.com,
www.keepingpace.com,
www.healthyshoestore.com
http://www.caringbridge.org/visit/calebryankelso
to meet a little friend of Jude's.
http://www.heartbeatsformito.org
for mito information.
http://www.emdn-mitonet.co.uk/
to read about mito and families living with mito.
http://www.elisangels.org
for an org that helps mito kids.
http://www.varietychildrenscharity.org
for an org that helps mito kids.
http://www.marcelsway.org
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