October 2, 2012
We learned of FIRST in 2005 when our son was born and diagnosed with Congential Ichthyosiform Erythroderma (also known as ARCI). We quickly learned they were the only organization of its kind in the US dedicated to helping families living with or caring for others with ichthyosis. The disease is very rare and we received conflicting and sometimes very frightening information on what our son’s life would be like. FIRST had so much information available that helped us to manage our son’s condition, find good doctors, and to be much less afraid. We now have two children with ichthyosis and we continue to use FIRST as a source of information and encouragement for navigating the condition, the many medical implications and for helping our children. Without FIRST, we would be navigating this disease completely on our own.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
MY ROLE:Client Served