conf. - free flights =) -( appts too )

[Guest guest]

> Right that's it! I don't care how I manage it, perhaps robbing a

> bank, stun gunning a millionaire or if I have to swimming

across the

> Atlantic - I simply have to get to the conference next time!!!

Jo -- ( and all the rest of you wonderful sweet new friends I've

been so fortunate to find here too )

Jo wrote -

I have read so mnay great reports about the infomration, advice

and

> brilliant friendship expereinced there, and now seeing those

> photographs I just desperately want to be part of it all.

>

> *Jo sneaks down stairs to dig down the back of the sofa*

Hmm, 25p

> found...that should get me to..ohh, at least the top of my road!

Me

> think me needs a bigger sofa....or that stun gun! ;-)

Gee Jo - I've so greatly appreciated the opertunity's to attend the

Chiari confrence ASAP ) -several times now and I've learned lots

about getting free plane flights there .

Angel Flights takes me to my doctor's appt's at UCLA - 500 miles

south of Paradise . In northern California - Paradise is on a

steep mountian finger of mud that flowed down the side of a

vocano Mt Lassen . It's beautiful pine /oak rainforest country -

lakes and rivers all around with salmon -bear -coons in the trash

and possums hanging lazy in the sun .

The airport is stright in on a 2000 ft clifftop /==many of the Angel

Flight pilots are flight instructors- airforce reserve fellows in

corperate jets = LOL, or friends who work for a west coast

medical related corp and fly around the executives /themselves

in small planes -- it's an awesome experience to ride with them !

- or others willing /enjoying the challenge =thrill of swouping on

in -=then they fly you anwhere you'd like - to a medical confrence

- or a doctors visit - thearpy /addative teck training to learn to use

a new type of addaptive tech - gosh you name it !

Angel flights will also fly friend /family who wish to go to where

someone is hospitalised free -- they flew me down as an aide

/retired nurse for a young woman having chiari decompresion

done - then staying for the post op week after discharge in a

Mc house .

Incedently - the national hospitality house group of free places to

stay ( or very low cost ) is a pretty awesome resource available to

those traveling for medical needs - I learn more about how to

find a place while staying at the Mc house I'd be

glad to discuss too .

But I digress - when someone wants to go more than 1000

miles the national patient travel hotline /folks will arrange free

tickets for you or will refer you to an airline currently offering seats

- it's pretty painless to ask them for a flight - the first time I did so

recently - they found out Angel Flights has been swouping me

out of Paradise ( G) of that cliff - and arranged me ticket for the

trip from Paradise clear to NY in mins themselves .

http://PatientTravel.org

So I too want to go next year -- at asap I've been part of a gaggle

of women all sharing one room cause we all came with peanut

butter /coffee pots of our own and the expectation of shareing

that one shower on schud. or missing your chance . I've learned

to bring my memory foam pad - pillows and lots of clothes to

share - tehehe - and have that girlhood experience of joy in a

roomful of girls giggling till dawn .

I know of possible sponsorship help through Wishes and

Rainbows too -- like ASAP does in offering a schollarship grant

of free registraion and the cost of sharing a room the first time

you attend - Wishes and Rainbows is offen able to offer a max. of

$200 per appt. to help cover food and hotel costs .

at http://www.wishesandrainbow.org

We would consider a grant to help with expenses of attending a

medical confrence related to someone's diagnosis --and

although our focus is chiari/sm folks assitance we state other

related conditions ect are within our misson too . with the

association of EDS to chiari established - searving someone

with EDS is the sort of related condition we ment to include in

our mission .

between a free flight - and the grant from wishes and rainbows -

I bet we can figure out a way you can get there !

I'd like to go too == Wanna share a room with a freeze dried

hippie from Paradise ?

We CAN go to confrences through the help of Angel Flights / and

the national PatientTravel.org folks when it's more than 1000

miles .

Beware - you can come home bewildered ! My first flight by Angel

Flights was at the sugestion /suported by the ASAP org.'s one

employee at that time . She knew from their listserve and talking

with me on the phone -- that both chiari and ms had been

confirmed - and I was getting worse and worse with the local

doctors insisiting nothing was wrong .

She sugested if I'd fly to Portland on Angel Flights -she'd give me

free registration for a bit of volenteer help - and I could stay with a

friend nearby - arrive with my MRI " S in hand and she'd arrange

an appt with at least one of the asap medical board .

I arrived with those mris - and then got the shock of my life -- just

immagine eight of the worlds best guru's in chiari --gathered

with the MRI's plastered against hotel hallway windows for light

in a row - ARGUEING /Squabling about my weird plight of acm

and ms too . That was when it truly sank in I was in a big big

pickle = LOL .

I've done this quite a lot now and flown to appt's /surgery

/confrences and peer aide suport appt's . I'll need to learn a bit

about Canada for Angel Flights equivelent /partner now =

Airlifeline here folded into Angelflights and I know were to just

call Angel Flights now - LOL - but I do know who to ask -tehee.

I will be glad to try and help any of you wishing to fly free for

medically related reasons . As Vp of Wishes and Rainbows - I've

been helping lots of family's work out getting to appts with the

specialists this last couple years -it's pretty astounding and

wonderful to see everyone who needs too GET to the true

specialists -- I feel so fortunate to be one of them - but it's there

for us all :-)

in Paradise