Hello all it's been a while since I've written on this page. My nephew and niece have 2 extremely rare genetic disorders. The first is Chromosome 15q13.3 microdeletion there are around 105 people in the world to have this! Because of it they have Autism, Birth Defects, Cerebral Palsy, Seizures, Hearing and Vision issues, Auditory/Sensory/Visual Processing Disorder. The second they have is Hypohidrotic Ectodermal Dysplasia. Ecto as we call it at home is a genetic skin disorder that affects their skin (they are prone to MRSA, Impetigo etc.), sweat glands (they do not sweat and can not go outside if it is hotter then 71 degreees without their cooling vests), hair (their hair is brittle, slow growing and they are missing their eyebrows), their nails (slow growing, and brittle), they have missing teeth and other issues. Of the 105 people to have the deletion they are the ONLY ones to have both!! The National Foundation for Ectodermal Dyplasia is having their annual family conference July 18-21 at the Buenavista Palace Spa & Resort in Orlando. We are trying to raise the funds to go to this valuable opportunity. Where the kids can meet other kids with Ecto, and meet Geneticists, Dermatologists, Dentists, and Pediatricians. Is there any tips, ideas, thoughts on fundraising, and what to do when we get there. We would like to stay a week after the conference. Anything helps. Thank you.