Re: GETTING A SPOKESPERSON

[Guest guest]

Faith,

that is a great idea...keep us in touch on how it goes...we need a

spokeperson who's been there or can draw national attention.

Made me think about...a short while back.... a TV interview about the

life of the kick boxing/excercise guru that created Tae Bo (sp?) I am

drawing a blank on his name....

Anyway, his wife used to be a big part of his excercise videos and

gyms. She is now disabled due to neurological symptoms that sound

just like chiari, after she was hurt in a freak accident while flying

a commercial plane that hit major turbulence, falling thousands of

feet, altho they did not crash...(the show did not explain in detail

the name of her condition), just that she now is in constant pain and

was diagnosed with a " pain " disorder & no longer can participate in

his excercise classes or videos & how dedicated he now is to her care

(like she was to help his career).

Wondered if she could have truama induced chiari, has anyone heard

about her or knows how to contact them, I think they are based on the

west coast and he has several gyms that he wks out of w/major

hollywood stars. Just a thought....

Dori

> We have a friend that has an in with the NJ Devils and we thought

maybe one

> of the Devils would be a good spokesperson for ASAP.

>

> I know others have tried but we can't give up HOPE.

>

> Our friend is a car dealer here in NJ and has the contract for

leasing cars

> to the Devils. Remember no ASAP no car -- might just work.

>

> Doug was even able to persuade five of the Devil Hockey Players to

attend a

> benefit dinner for last September. It was a wonderful event

and they

> were very interested about her disease but (slow as I am) I never

spoke to

> them about this directly.

>

> Most of the players are away for the summer but my hope is to get

as many

> stories as possible (CHILDREN'S STORIES DO TOUCH THE HEART) and

present it

> to them to think about.

>

> This is really a SHOT IN THE DARK but let's all hope and pray that

it might

> bring around something promising.

>

> Faith

>

>

> and Faith Webb

>

>

>

>

[Guest guest]

In a message dated 7/22/00 8:38:34 AM Central Daylight Time,

davidwwebb@... writes:

<< Most of the players are away for the summer but my hope is to get as many

stories as possible (CHILDREN'S STORIES DO TOUCH THE HEART) and present it to

them to think about. >>

Faith,

Please feel free to use 's story or contact me if you need any

information on him. I will be more than happy to help all I can.

I am sorry if I sounded like I gave up hope....I have not, nor will I

ever, I just do not want all the newbies trying so hard to get recognition to

suffer the let downs some of us have...If they do not get their hopes up to

much then if someone does come thru we will be ecstatic.... and if it does

not work out, there will not be toooo much disappointment.

Love, huggs, and prayers, Haydee (Nana to , 8 years old w/Spina

Bifida, ACM II, Hydrocephalus w/VP Shunt, Tethered Cord, Syringomyelia

w/Syrinx @ c1-c2, G-Tube fed, (totally NPO), Swallowing Coordination

Disorder, Neurogenic Bladder, ARDS (Lung Failure 3/30/97, 33 days on ECMO

(total lung bypass) 60 days on life support, 24 hr-Humidified Oxygen

Dependant, Radical Tracheostomy w/total loss of Vocal Cord Use, Paralyzed

from the Waist Down, 18 Surgeries, Asthma, Severe Latex Allergy, Allergy to

many Medications, Adhesives, and tons of other stuff, Posterior Fossa

Decompression, Opening of the Dura, No Graft, c1-c2 Laminectomy , March 2,

1999, so far so good and getting better and stronger every day!!!With Such a

Wonderful Love of Life and one crazzzzzy Nana (dx'd so far with

Hypothyroidism, GERDS, IBS, Sleep Apnea, Severe Edema)living right outside

Baton Rouge, Louisiana)

's Web Page~~~~> <A HREF= " http://www.pressenter.com/~chip/joshua.htm " >Th

e Story</A>

http://www.pressenter.com/~chip/joshua.htm