Re: Final request for dedication names

[Guest guest]

Hi, Helen,

Thank you very much for your effort to spread SMA

awareness to general poplulation! You can list my son

Lou to your list. He was born on Apr.5, 2003,

has weak type II. If you need more info, just let me

know, I am very happy to support The Journey.

Thank you very much again!

jenny

--- Helen Baldwin <jeffreyb@...> wrote:

> Greetings!

>

> This is a final request for names for the dedication

> in the upcoming

> revision of The Journey. For newcomers, the

> book is about our

> brief time with our baby (Type 1) and is

> accompanied by a CD

> of the music my mother wrote for him. The book’s

> special dedication

> has one section honoring those with SMA and another

> serving as a

> memorial. There are almost 1000 names now, and I’d

> like more to help

> spread awareness that SMA is prevalent enough to

> warrant serious

> attention. If you are interested in submitting a

> name, send the name

> as you would like it listed, along with a nickname

> if desired, and

> whether it belongs in the honor or memorial section.

> No other

> information is needed, and there are no restrictions

> regarding number

> of names, location, age/date, etc. Please share this

> request with

> other SMA families! I would like to have the names

> by October 10.

> Names will be taken at any time after that date and

> will be included

> until the revisions are ready to be sent to the

> publisher; after

> that, they will be held for the next revision.

>

> If you would like to receive an occasional e-mail

> update about the

> book and others’ SMA news and projects, etc., please

> let me know. If

> you are receiving them and want to stop, please let

> me know that as

> well.

>

> Finally, a big thanks to those who have responded to

> my daughter

> ’s request for info about school/education

> accommodations! If

> anyone else is interested, the focus of her senior

> paper/presentation

> is the ‘creativity’ required for adapting the

> educational environment

> for children with Type 1 and weak Type 1 (all ages,

> past and

> present). Some families with Type 3 children have

> also sent notes,

> and she may very well be able to incorporate them,

> so if you and/or

> the school have come up with some ways to facilitate

> your child’s (or

> your own) education, please share! She will make the

> paper available

> at some point for anyone interested. She will be

> doing a power point,

> so any ‘working’ pictures, whether in school or at

> home, would be

> greatly appreciated. Information should be e-mailed

> within the next

> few days if at all possible.

>

> As usual, thanks so much for your help!

>

> Helen Baldwin

> jeffreyb@...

>

>

>

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