Adults who have CHARGE

[Guest guest]

To everyone connected with individuals who are adults (or soon to be) who

have CHARGE Syndrome I wanted to let you know what is soon to be occurring.

Please don't be afraid of your childrens future. There are a few changes coming

everyone's way.

As we all know there just aren't enough studies being done on/for older

individuals. Our lovely CHARGE specialists know that and are beginning to

change

this. Tim Hartshorne, who has been involved with our children for ages, is

doing a study with Meg Hefner, Kim Blake, and Kirk.

These

are all specialists who have been with our children for years. Tim is also a

parent so that gives him a reality check all the time! I think he and his

wife help everyone see the big picture. The title is Natural History of

CHARGE Syndrome through Adolescence.

Along with that Laurie Denno and Pam are involved in their own research,

data collection, of life after graduation. They too are our CHARGE

Specialists. They are gifted individuals who will help us as well.

Now, along with that the CHARGE Syndrome Foundation is also moving forward

and have developed a committee to look at issues about Adults who have CHARGE

Syndrome. I am the leader of this committee. There are numerous things this

committee is beginning but as of yet we are first trying to determine what makes

the definition of " adult. " I will be working with the members on the

committee and will proposing what we find to the board. Currently I believe we

need

to start at the age 14-which is when transition to adulthood is supposed to

begin. But I am not sure on that one. It might be 16 or even 18. The entire

board has to be the final decision maker.

I am also in the process of developing a data base of adult individuals who

have CHARGE Syndrome. And I am speaking of everyone, across the entire

spectrum and across the world. I am also speaking of indiviuduals who are age

14 and

older. If you know of anyone at all who is age 14 on up and who have CHARGE

Syndrome, being a member of the foundation or not, would you please, with

permission, send me their name, age, address, and family information so I can

add

them to my info. Please do this privately as there are legal privacy

issues!!!!!!! Send it to Turk22082@.... You can title it CHARGE Adult.

Later on we will be asking other information as well. Right now we just need

to " find " everyone.

Then ... we will be moving forward soon in doing other things such as maybe

developing a pilot mentoring program. There's more but I don't want to get

anyone's hopes up without getting permission for things by the entire board.

Oh yea, that leads me to----I hope everyone is a member of the CHARGE

Foundation. I hope all adults are individual members. Adults can stand strong

against discrimination and neglect, etc., if they are united. And we as Board

members can and will help you as much as possible. Belinda, that is why I

offered

to make a call for you. You are no longer alone in your struggles.

Once again, if you can please e-mail me the names, age, addresses (including

e-mail address) and/or family information- such as

Father:

Mother:

Sister(s):

Brother(s):

And their ages as well.

Once again, please do this privately.

I am so happy to be looking to the future now.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to