2nd Annual Caregiver Weekend - Patients are invited...

[Guest guest]

SAVE THE DATE

APRIL 24 TO 26, 2009

Are you excited? Well, Ramah and I are excited.

These are the dates of the " Second Annual Caregiver Weekend " to be

held in Orlando, Florida. The weekend will start about mid

afternoon on Friday and end mid afternoon on Sunday. We hope to

know more for you after Oct. 6th since Ramah and I will be getting

together the first few days of October to pick hotels/restaurants

and what lectures we want to have.

So far we have talked about getting a lung transplant patient and

doctor (or nurse), hospice, and social security. If you have topics

that you'd like to hear at the weekend, please let us know. We are

open to any suggestions. We will also pick a hotel that will allow

you to stay a few days longer at a reduced rate so you can go to

Disney or Sea World. We will not be including these in our plans

since this weekend is about care giving.

Just so that everyone can start saving their pennies –

BREATHE!

D and Ramah

PS All caregivers (wives, husbands, friends, children and even the

mother-in-laws) are invited and so are our dear patients. We feel

that those patients who did come last year got as much knowledge and

friendship as the caregivers did.

Ramah (neonrae@...)

(kwdopher@...)

I will forward more information as I get it. Hope you can come!

Leanne Storch

Executive Director

Pulmonary Fibrosis Foundation

1332 N. Halsted, Suite 201

Chicago, IL 60642-2642

Phone

[Guest guest]

I'm excited too.....

Let me toss a bit more information out too about the timing. April

19-May 21 is Regular Season (second lowest rate period) at Disneyworld.

These seasons also affect non-Disney hotels around. The peak spring

season has just ended and summer season not yet started so a perfect

time to go.

The average high is 83 and average low is 60 with only 2.4 inches of

average April rain. So, you're talking a lot of time in the 70's to

enjoy the outdoors.

Anyone who possibly can should include the week before or after in their

plans as there is so much to see and do, starting with Disneyworld.

Disney still has available rooms as low as $120 for that time of year.

Other very nice lodging nearby is available as low as $75 per night.

However, one warning, since it is a weekend. Weekends book very early. I

just searched and found many Disney Hotels already sold out and others

will follow. So, everyone needs to give this some immediate thought. If

in doubt, may be good idea to go on and book, making sure there is no

cancellation penalty.

As an aside, I hope we can also as a group put something together that

gets more of our midwest and west coast members. There are so many I

want to meet. In fact, my dream over the next year would have three

gatherings. Orlando, somewhere Midwest to pick up all the Indiana,

Illinois, Ohio, Minnesota, etc, and Somewhere west to pick up

Washington, Oregon, California, and Nevada.

We should thank the caregivers for organizing annual events but we also

need to be proactive in putting together more.

>

> SAVE THE DATE

>

> APRIL 24 TO 26, 2009

>

>

>

> Are you excited? Well, Ramah and I are excited.

>

>

>

> These are the dates of the " Second Annual Caregiver Weekend " to be

> held in Orlando, Florida. The weekend will start about mid

> afternoon on Friday and end mid afternoon on Sunday. We hope to

> know more for you after Oct. 6th since Ramah and I will be getting

> together the first few days of October to pick hotels/restaurants

> and what lectures we want to have.

>

>

>

> So far we have talked about getting a lung transplant patient and

> doctor (or nurse), hospice, and social security. If you have topics

> that you'd like to hear at the weekend, please let us know. We are

> open to any suggestions. We will also pick a hotel that will allow

> you to stay a few days longer at a reduced rate so you can go to

> Disney or Sea World. We will not be including these in our plans

> since this weekend is about care giving.

>

> Just so that everyone can start saving their pennies –

>

>

> BREATHE!

>

> D and Ramah

>

> PS All caregivers (wives, husbands, friends, children and even the

> mother-in-laws) are invited and so are our dear patients. We feel

> that those patients who did come last year got as much knowledge and

> friendship as the caregivers did.

>

>

>

> Ramah (neonrae@...)

>

> (kwdopher@...)

>

> I will forward more information as I get it. Hope you can come!

>

> Leanne Storch

> Executive Director

> Pulmonary Fibrosis Foundation

> 1332 N. Halsted, Suite 201

> Chicago, IL 60642-2642

> Phone

>

[Guest guest]

COUNT ME IN!! I'm glad to know early cause this will definitely require some penny saving but I will be there if I have to pitch a tent on Mickey Mouse's doorstep!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

2nd Annual Caregiver Weekend - Patients are invited...

SAVE THE DATEAPRIL 24 TO 26, 2009Are you excited? Well, Ramah and I are excited.These are the dates of the "Second Annual Caregiver Weekend" to be held in Orlando, Florida. The weekend will start about mid afternoon on Friday and end mid afternoon on Sunday. We hope to know more for you after Oct. 6th since Ramah and I will be getting together the first few days of October to pick hotels/restaurants and what lectures we want to have. So far we have talked about getting a lung transplant patient and doctor (or nurse), hospice, and social security. If you have topics that you'd like to hear at the weekend, please let us know. We are open to any suggestions. We will also pick a hotel that will allow you to stay a few days longer at a reduced rate so you can go to Disney or Sea World. We will not be including these in our plans since this weekend is about care giving. Just

so that everyone can start saving their pennies –BREATHE!D and RamahPS All caregivers (wives, husbands, friends, children and even the mother-in-laws) are invited and so are our dear patients. We feel that those patients who did come last year got as much knowledge and friendship as the caregivers did.Ramah (neonrae (AT) comcast (DOT) net) (kwdopher (AT) hughes (DOT) net)I will forward more information as I get it. Hope you can come!Leanne StorchExecutive DirectorPulmonary Fibrosis Foundation1332 N. Halsted, Suite 201Chicago, IL 60642-2642Phone