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rafiki77
04-20-2012, 07:07 PM
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. :wave2:

lost*in*cyberspace
04-21-2012, 07:27 PM
It's kind of late to start any kind of fundraising for a trip starting this July. I'll bump this in case anyone has any ideas. Good luck.

Mrs K
04-21-2012, 09:38 PM
My friend's son has 15q deletion syndrome. It is also called idic 15. I hope that your family finds a way to go to the conference.

SueM in MN
04-22-2012, 07:40 AM
As the others posted, it is kind of late to get the funds to go in July.

I've got a couple of suggestions to try:
- fund raisers often do better when people feel. Personal connection with the person being helped, so I would look to places that might already know the family, such as businesses in town where they go often, church, school, etc.
Don't forget places where people like grandparents or aunts/uncles go.

- you might alo try organizations, such as Lions Club, Kiwanas - especially if anyone in the family is active in them.

- some people have been successful with Facebook campaigns - include links to the conference information and any websites about the disorder so people can get information and more knowledge about the condition.

Here's a link to the conference, in case anyone is interested:
http://nfed.org/index.php/news_events/page/31st-annual-national-family-conference

I noticed the deadline for registration is June 22, so you have a pretty short time.
I also noticed that there are several sponsors of the organization - you may want to find out if there are any businesses associatd with those sponsors - if so, they may have employees who are willing to work on fundraising in support of an organization that their company is sponsoring.

The DISBOARDs don't allow solicitations for funds without approval from the Webmasters, so you won't be able to post any requests for funds unless you go through that step.

Hopefully others will have some other suggestions and they would be able to go.

rafiki77
04-23-2012, 12:27 PM
First let me make it clear that I am not trying to get the funds from here, just ideas, And all ideas are greatly appreciated. :thumbsup2 I have already sent support letters to various places, Lions Club, local businesses etc. I have also sent in the registration forms to the foundation with my request for scholarship. Just trying to see if there are any other ideas out there, that perhaps I haven't thought of. Thanks again for the advice. How about advice on things to do while at WDW/Florida? Thank you.

lost*in*cyberspace
04-23-2012, 12:52 PM
Get a good travel book for the area. You'll get lots of good ideas.