The Cystic Fibrosis Foundation

[Guest guest]

Last week, I was able to meet with Dr. Bob Beall and Dr. Preston

of the CFF in Dr. Beall's office in Bethesda, land. I

requested the meeting about two weeks in advance, and they spent an

hour with me.

The purpose of my request was to learn more about the communications

that come out of the CFF. Some highlights;

1. A concern is teaching people the role of the CFF. It is to fund

research into treatments and a cure. It is unfortunate that we all

have medical expenses and other issues we want the CFF to help us

with, but that is not their purpose and never will be. Improved

treatments, new drugs, and some day a cure is what they focus on.

My point is that with almost 1,000 new diagnoses of CF every year,

the CFF can not rely on their old information to tell people this.

They will need to keep saying this over and over because of the new

people that come into the CF community every year. Us old timers

may get tired of hearing that, but we need to consider the newbies.

2. What are the current CFF funded research projects? I was given

a couple lists that describe these studies and their status. When I

first look at the list I think, " We haven't seen much for our

efforts so far " . But I listened to Dr. describe what's is

involved, how long these studies take (3 to 7 YEARS!), and what they

are trying to do, it helped. Everyone wants the results faster,

including these two guys. I believe that.

3. So, what are these studies, how are they going, why does it take

so long, and are they going to work? I suggest those of interest do

three things. First, visit

http://www.cff.org/research/clinical_trials.cfm and read and print

and save. Second, and this was the MOST ENLIGHTENING part of my

whole day; DISCUSS THIS IN DETAIL WITH YOUR CF CARE CENTER

DIRECTOR. The CFF relies on news and updates to come to us from the

CF Care Center. My son 's CF Care Center (UNC-Chapel Hill)

does not provide data and CF care techniques and procedures unless

we ask first. So the comment embedded within CFF articles that

says " Contact your local CF Care Center for more information " -

guess what - they really mean it. If you feel you are not being

told all there is to know about CF care for you or your child, Dr.

Beall and Dr. are expecting us to go straight to the office

of our CF Care Center Director! And third - please provide copies

of everything you read and print to the CF Care Center doctors and

directors and ask them how they intend to treat you or your child.

4. The CFF does NOT provide any recommendations on treatment of CF

patients. They do not provide guidelines, recommendations,

opinions, or any other input into the care of patients. Therefore,

there is no standard of care of cystic fibrosis in America. Each CF

doctor is on their own for providing care. That means that if we

want our CF child to receive a particular style of treatment (say

Pulmozyme) for example, but our CF doctor says, well, I'm not sure

just how effective it is so I don't recommend it, yet WE want to use

it, we need to go to a different doctor. The CFF will not recommend

to that doctor that they utilize that treatment. We're on our own.

5. Their budget this year is to raise over $106 million but they

are planning to spend over $120 million. The money is spent on more

than research. They also pay for things like specialists in the CF

Care Centers.

If anyone would like to know more about my visit, please contact

me. Do I believe the CFF is perfect? - no. But they have always

welcomed me there (this was my third visit) and listened to my

questions and concerns. I beleive 's best hopes for improved

treatments and some day a cure will come from the CFF, so I will

continue to support them.

Dan (Dad of jacob 17cf, 15nocf)

[Guest guest]

I am very new to this disease and the CFF. My son was only

diagnosed 4 1/2 months ago, so your post was of great interest to me.

I have some questions and I hope you can enlighten me.

When my son was first diagnosed I immediately went to the CFF

website to find the CF Care Centers. Am I to understand that they

give their stamp of approval to all Care Centers, but have no idea

what " standard of care " the patients are getting? That really

blows my mind. From what I have pieced together by being on this

list, some doctors are aggressive and some are very uninformed.

There is not any way to find a good center unless it is through

trial and error because they all make the list on the website.

The second point of confusion I have is that the CFF is spending

millions to develop medicines and want our children to participate

in trials, but then says they cannot make any recommendations on

treatment. That seems really extremely counterproductive.

If I have misunderstood, please correct me.

Sara - very confused mom of Zach 17 months wcf

> Last week, I was able to meet with Dr. Bob Beall and Dr. Preston

> of the CFF in Dr. Beall's office in Bethesda, land.

I

> requested the meeting about two weeks in advance, and they spent

an

> hour with me.

>

> The purpose of my request was to learn more about the

communications

> that come out of the CFF. Some highlights;

>

> 1. A concern is teaching people the role of the CFF. It is to

fund

> research into treatments and a cure. It is unfortunate that we

all

> have medical expenses and other issues we want the CFF to help us

> with, but that is not their purpose and never will be. Improved

> treatments, new drugs, and some day a cure is what they focus on.

> My point is that with almost 1,000 new diagnoses of CF every year,

> the CFF can not rely on their old information to tell people

this.

> They will need to keep saying this over and over because of the

new

> people that come into the CF community every year. Us old timers

> may get tired of hearing that, but we need to consider the newbies.

>

> 2. What are the current CFF funded research projects? I was

given

> a couple lists that describe these studies and their status. When

I

> first look at the list I think, " We haven't seen much for our

> efforts so far " . But I listened to Dr. describe what's

is

> involved, how long these studies take (3 to 7 YEARS!), and what

they

> are trying to do, it helped. Everyone wants the results faster,

> including these two guys. I believe that.

>

> 3. So, what are these studies, how are they going, why does it

take

> so long, and are they going to work? I suggest those of interest

do

> three things. First, visit

> http://www.cff.org/research/clinical_trials.cfm and read and print

> and save. Second, and this was the MOST ENLIGHTENING part of my

> whole day; DISCUSS THIS IN DETAIL WITH YOUR CF CARE CENTER

> DIRECTOR. The CFF relies on news and updates to come to us from

the

> CF Care Center. My son 's CF Care Center (UNC-Chapel Hill)

> does not provide data and CF care techniques and procedures unless

> we ask first. So the comment embedded within CFF articles that

> says " Contact your local CF Care Center for more information " -

> guess what - they really mean it. If you feel you are not being

> told all there is to know about CF care for you or your child, Dr.

> Beall and Dr. are expecting us to go straight to the

office

> of our CF Care Center Director! And third - please provide copies

> of everything you read and print to the CF Care Center doctors and

> directors and ask them how they intend to treat you or your child.

>

> 4. The CFF does NOT provide any recommendations on treatment of

CF

> patients. They do not provide guidelines, recommendations,

> opinions, or any other input into the care of patients.

Therefore,

> there is no standard of care of cystic fibrosis in America. Each

CF

> doctor is on their own for providing care. That means that if we

> want our CF child to receive a particular style of treatment (say

> Pulmozyme) for example, but our CF doctor says, well, I'm not sure

> just how effective it is so I don't recommend it, yet WE want to

use

> it, we need to go to a different doctor. The CFF will not

recommend

> to that doctor that they utilize that treatment. We're on our own.

>

> 5. Their budget this year is to raise over $106 million but they

> are planning to spend over $120 million. The money is spent on

more

> than research. They also pay for things like specialists in the

CF

> Care Centers.

>

> If anyone would like to know more about my visit, please contact

> me. Do I believe the CFF is perfect? - no. But they have always

> welcomed me there (this was my third visit) and listened to my

> questions and concerns. I beleive 's best hopes for improved

> treatments and some day a cure will come from the CFF, so I will

> continue to support them.

> Dan (Dad of jacob 17cf, 15nocf)