I am forwarding this message from Noah's Mom Anri. Noah is on Aaron's Page
and passed away last year. His mother is working on an exciting project
that will be helpful to both English speaking and German families. If any
of you have time to take a look at the tracheostomy section of the site
listed below and could send feedback to Anri Schramm anri@..., your input
would be very helpful and appreciated.

Sincerely,
Cynthia Bissell

-----Original Message-----
From: Anri Schramm [mailto:anri@...]
Sent: Wednesday, September 18, 2002 6:55 PM
To: Cynthia Bissell
Subject: Stiftung NOAH


Dear Cynthia,

This is Anri. mother of two trached kids, Noah and Ruben. You may
remember me from the Trach Ties mailing list.

As you may recall, our oldest son Noah died last year. After his death
we set up the Stiftung NOAH - or NOAH Foundation - a public non-profit
charity aimed at helping parents to care for special children by
coordinating the expertise of parents, doctors and caregivers on any
given condition or disease, organizing the information thus gathered and
publishing it both online and as books in the form of Care Guides, which
are made available free of charge.

In the long run we plan to create an exhaustive resource covering as
many diseases or conditions as possible, by connecting with parents of
children with other care-intensive conditions and helping them to write
and structure Care Guides for their particular situation and make them
available via the Stiftung NOAH.

The Care Guides will be published in both German and English in order to
reach as many people as possible. Our primary focus are children in
Germany, because there are not many free online German language
resources for people caring for a sick child and because this is where
we have gathered our experience with doctors, medical customs and
bureaucracy.

Because both our kids have trachs and feeding tubes, we were able to
write the first two Care Guides on Tracheostomy Care and Enteral
Nutrition ourselves, in close cooperation with a number of doctors and
specialists. The Trach Care Guide is now finished in English and it
would mean a lot to me if you could read through the material and tell
me what you think of it.

You can find it at http://www.stiftung-noah.de .

I would also like to post the link on the Trach Ties mailing list, in
order to get the opinions of all the specialists on it to help us iron
out the remaining mistakes and bugs.

Your work has been an inspiration and a help to us from day one! I look
forward to hearing from you.

Regards

Anri Schramm
Stiftung NOAH
anri@...