Re: Question for those in NIH study regarding AirLine

January 20, 2006

HUM very interesting. I have been paying for our airfare all three times we

have been so far next month being the fourth! NEVER HAVE ANGEL FLIGHT BEEN

MENTIONED. oops sorry about caps!

I do know that Our case worker at BCH looked into Angel flight for us but i was

not comforable flying in a single engine plane! Most of the planes are

'puddlejumpers' Although it depends on the pilots in the area who volunteer for

the service! You could get a coperate jet i was told!

--

-------------- Original message ----------------------

From: " Fran Bulone " <fbulone@...>

January 20, 2006

>>>HUM very interesting. I have been paying for our airfare all three times

we have been so far next month being the fourth! NEVER HAVE ANGEL FLIGHT

BEEN MENTIONED. oops sorry about caps!

I do know that Our case worker at BCH looked into Angel flight for us but i

was not comforable flying in a single engine plane! Most of the planes are

'puddlejumpers' Although it depends on the pilots in the area who volunteer

for the service! You could get a coperate jet i was told!>>>

Yes... This research for the periodic fever syndromes does not have funding

to fly the patients.... so they refer to Angel Flight. I sent in a request

last night and I am waiting to hear.

I love flying on small planes... We were told it would either be a small

private plane or a corporate jet from one of the larger banks here in

Charlotte... who donate the planes and the pilots donate their time.

We shall see.

I definitely cannot afford to fly up every couple of months for the follow

up visits once ph starts the Ankarina.

So hopefully this method works out well!

God Bless,

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

January 20, 2006

I think we were asked if we needed our airfare arranged the first

time we went. I don't know if they were offering to pay. But with

a 2 yr old and a 3 yr old (and with me now pregnant again!)it's

easier for us to drive. I think I remember another family a long

time ago mention that their commerical flights were paid for or

deeply discounted.

>

> HUM very interesting. I have been paying for our airfare all

three times we have been so far next month being the fourth! NEVER

HAVE ANGEL FLIGHT BEEN MENTIONED. oops sorry about caps!

> I do know that Our case worker at BCH looked into Angel flight for

us but i was not comforable flying in a single engine plane! Most

of the planes are 'puddlejumpers' Although it depends on the pilots

in the area who volunteer for the service! You could get a coperate

jet i was told!

>

> --

>

> -------------- Original message ----------------------

> From: " Fran Bulone " <fbulone@c...>

>

January 20, 2006

>>> I think we were asked if we needed our airfare arranged the first

time we went. I don't know if they were offering to pay. But with

a 2 yr old and a 3 yr old (and with me now pregnant again!)it's

easier for us to drive. I think I remember another family a long

time ago mention that their commerical flights were paid for or

deeply discounted. >>>

Last year when Bev set our visit up she asked me how we would get to the

NIH.

I told her we would fly....

She asked if we were ok with flying and having to pay for it this first

time... I answered yes... we would pay for the fares... HIGH too... from

Charlotte.... I believe we paid $240.00 rd trip for each one of us. I asked

if NIH helps... directly... and she said if ph was accepted into the

study and needed to come back.... for multiple visits ... such as follow up

medications .... testing etc... Then she would guide me to the appropriate

organization. She did say that the research study did not actually have the

funds to pay for a commercial airline ticket but not to concern myself

because there were ways to get a trip to the NIH....

That was last year....

When I mentioned to ... she gave me no answer... she only said Rhonda

the coordinator would call and help with ALL that!!

Since Kastner mentioned Angel Flights I did a Google Search and found the

Mid-Atlantic Angel Flights and filled out the online request.... now we are

waiting to hear from them... I will let you know what happens.

God Bless

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

January 20, 2006

Hi everyone:

I am reading all this airline information and find it all intersting

and different from what I was told. We (myself, husband and son)are

flying to the NIH on Monday, January 23 (yes, this Monday) for a

Tuesday appointment for the study.

Plass told me last week that we had to pay for the first trip

up there, but after this if there are subsequent trips, the study

picks up the tab. (She did not distinguish between commercial or

otherwise). The other day the " care coordinator " or similar title

called and told me what time we need to be where and said, " okay we

have to get you tickets to fly up here. " I said, " I have tickets ,

but are you telling me that the NIH would have arranged and paid for

them? " Then he said, he was new and wasn't sure. We dropped that

subject pretty fast, but I will find out (as best I can) the story

on the airline tickets on Tuesday and let you all know.

As for the shuttles from the airport to the NIH and Children's Inn -

they have a schedule and it is good, but may not be very convenient

to your flight. I called EVERY car rental company that rents from

BWI airport and Dollar and Budget were the cheapest by far - at

about 45 dollars a day with all taxes, fees etc. The child's

booster seat is an additional $5. Not a bad price.

As for the appt., I have to be at admissions at 8. Then at 9:45 my

husband and son will meet me at the clinic for a nurse to take my

son's vital signs and weight. Then we meet with a doctor at 10 a.m.

(I doubt we will see Dr. Kastner the first time) and then at 11 he

gets some blood drawn and then they say " good bye. " We are back on

our way to the airport for a 4:00 flight back to Tampa. Quick trip.

I am not sure future trips will be in our future, as Jonah has not

had a fever in 5 months and 2 days (knock on wood) - as you can tell

I count the days. I will let everyone know about the trip when we

get back.

Wish me luck!!!! in Tampa

>

> >>>HUM very interesting. I have been paying for our airfare all

three times

> we have been so far next month being the fourth! NEVER HAVE ANGEL

FLIGHT

> BEEN MENTIONED. oops sorry about caps!

> I do know that Our case worker at BCH looked into Angel flight for

us but i

> was not comforable flying in a single engine plane! Most of the

planes are

> 'puddlejumpers' Although it depends on the pilots in the area who

volunteer

> for the service! You could get a coperate jet i was told!>>>

>

> Yes... This research for the periodic fever syndromes does not

have funding

> to fly the patients.... so they refer to Angel Flight. I sent in a

request

> last night and I am waiting to hear.

>

> I love flying on small planes... We were told it would either be a

small

> private plane or a corporate jet from one of the larger banks here

in

> Charlotte... who donate the planes and the pilots donate their

time.

> We shall see.

> I definitely cannot afford to fly up every couple of months for

the follow

> up visits once ph starts the Ankarina.

> So hopefully this method works out well!

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 6 yrs old

> Waxhaw, NC

> Owner & Moderator Group

>

January 20, 2006

See and told our genetics nurse that all subsequent trips would be paid

for.. so.. im central alberta canada.. you seriously think i can get a cheap

flight????

costs me about 1200 a person at least!!!

I cant afford to come paying for it.. so genetics and the alberta government was

footing it.. what are they going to do when it costs them 5000 a trip?

and yes what about the shuttling. I cant afford a car rental!!

VAnessa mom to kiara 5

3 years of fevering to date