Juggling Cystic Fibrosis

[Guest guest]

Hello everyone,

I am usually on Cystic-l, decided to write here today too!!! As some

of you may know, and others may not. I created a health journal to

record medical information in for CF parents, and patients. I made it

for my daughter, and then her clinic wanted them...and it snowballed

from there.

Recently I began accepting credit cards, so I faxed, and emailed most

of the clinics in the country with the information. The ultimate goal

when I started was to get the clinics to purchase the journals for

the parents...I have also sent several clinics order information to

give directly to the patients and caregivers, should they decide not

to provide them for the patients. I am trying to update my list of

clinics, with addresses and fax information. As well as get an idea

if any of the clinics are getting the information to the parents.

WOuld you mind writing me directly at thelittleacorn1@... to

let me know if you have gotten information from your clinic, as well

as any information about your clinic that may help me get the message

to them (ie. address, fax, cf coordinator). I would appreciate it so

much. I really believe in this journals value to the CF community,

and I know that the parents are the best place to start when trying

to get a message across. Thank you in advance for your help.

Sincerely,

Mom to Keenan- 8years old, wocf, and Paige 3 yearsold wcf.

[Guest guest]

Hello everyone,

I am usually on Cystic-l, decided to write here today too!!! As some

of you may know, and others may not. I created a health journal to

record medical information in for CF parents, and patients. I made it

for my daughter, and then her clinic wanted them...and it snowballed

from there.

Recently I began accepting credit cards, so I faxed, and emailed most

of the clinics in the country with the information. The ultimate goal

when I started was to get the clinics to purchase the journals for

the parents...I have also sent several clinics order information to

give directly to the patients and caregivers, should they decide not

to provide them for the patients. I am trying to update my list of

clinics, with addresses and fax information. As well as get an idea

if any of the clinics are getting the information to the parents.

WOuld you mind writing me directly at thelittleacorn1@... to

let me know if you have gotten information from your clinic, as well

as any information about your clinic that may help me get the message

to them (ie. address, fax, cf coordinator). I would appreciate it so

much. I really believe in this journals value to the CF community,

and I know that the parents are the best place to start when trying

to get a message across. Thank you in advance for your help.

Sincerely,

Mom to Keenan- 8years old, wocf, and Paige 3 yearsold wcf.