My contribution from Payday  went to CFC International for the Cardio-Facio-Cutaneous Syndrome.  We have a dear friend, Megan, that suffers from this Syndrome.   She is 20 years old, is 3 foot tall and weighs  about 60 pounds.  She cannot walk, talk  or eat solid food.  She is fed through a feeding tube and is totally reliant on her parents, family and friends for everything. One of the constants with this syndrome is that internally they have issues with the heart (i.e Cardio) and she has had three open heart surgeries to repair or replace valves in her heart.
One of the interesting things about this is all of those that suffer with this syndrome look alike –(i.e Facio). They have the same facial features, sparse  curly hair and almost all need glasses.  There are only around 100 in the US from what I understand.
The organization hosts a yearly  conference where all families from the US and International come together with Doctors, Medical Researchers, Sponsors and  Directors.  The Doctors and Medical Researchers interview, run medical tests, and document each participant with the syndrome; building information for further research.  Sponsors and Directors hold educational meetings and tell of discoveries and what is being worked on for the future.  The professionals time is all donated.  All of the families were hosted with donated funds.
Sadly, even with all of the leaps and bounds made with the research being done life expectancy is only around 24-25 years of age.   We hope that with the donations given that we can have that number change.
http://www.cfcsyndrome.org/pdf/newsletter/CFCNewsletterOct13.pdf

-Julie K.