Annual CF Family Education Day

JennyCoulon · May 19, 2008

I was just wondering if any of you have an Annual CF Family Education Day that is offered by your pulmonary clinic docs? We have one every year, this years' was just this past Saturday. It is day for people with or families of someone with CF to see how our clinic is ranked as far as BMI, clinic visits, weight gain, etc compared to other CF clinics around the US. They usually have guest speakers, lunch, and all of the different vendors with free stuff for families with CF.

We got the priviledge of having Ana & Isa, the two Japanese twins who wrote a book " The Power of Two~A Twin Triumph Over Cystic Fibrosis" come and speak and sign copies of their books. We also got to have Dr. Preston Campbell speak to us. Dr. Campbell went over the drugs that are in clinical trials that you can find on CFF.org and what each one will do for CF. There were a few that seemed very promising such as VX-770 and PS124.

I was just curious if there are any other centers that do this for the patients and their families. After leaving I really felt that in the next 10-15 years there will be a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">

JennyCoulon · May 19, 2008

I was just wondering if any of you have an Annual CF Family Education Day that is offered by your pulmonary clinic docs? We have one every year, this years' was just this past Saturday. It is day for people with or families of someone with CF to see how our clinic is ranked as far as BMI, clinic visits, weight gain, etc compared to other CF clinics around the US. They usually have guest speakers, lunch, and all of the different vendors with free stuff for families with CF.

We got the priviledge of having Ana & Isa, the two Japanese twins who wrote a book " The Power of Two~A Twin Triumph Over Cystic Fibrosis" come and speak and sign copies of their books. We also got to have Dr. Preston Campbell speak to us. Dr. Campbell went over the drugs that are in clinical trials that you can find on CFF.org and what each one will do for CF. There were a few that seemed very promising such as VX-770 and PS124.

I was just curious if there are any other centers that do this for the patients and their families. After leaving I really felt that in the next 10-15 years there will be a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">

JennyCoulon · May 19, 2008

I was just wondering if any of you have an Annual CF Family Education Day that is offered by your pulmonary clinic docs? We have one every year, this years' was just this past Saturday. It is day for people with or families of someone with CF to see how our clinic is ranked as far as BMI, clinic visits, weight gain, etc compared to other CF clinics around the US. They usually have guest speakers, lunch, and all of the different vendors with free stuff for families with CF.

We got the priviledge of having Ana & Isa, the two Japanese twins who wrote a book " The Power of Two~A Twin Triumph Over Cystic Fibrosis" come and speak and sign copies of their books. We also got to have Dr. Preston Campbell speak to us. Dr. Campbell went over the drugs that are in clinical trials that you can find on CFF.org and what each one will do for CF. There were a few that seemed very promising such as VX-770 and PS124.

I was just curious if there are any other centers that do this for the patients and their families. After leaving I really felt that in the next 10-15 years there will be a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">

JennyCoulon · May 19, 2008

I was just wondering if any of you have an Annual CF Family Education Day that is offered by your pulmonary clinic docs? We have one every year, this years' was just this past Saturday. It is day for people with or families of someone with CF to see how our clinic is ranked as far as BMI, clinic visits, weight gain, etc compared to other CF clinics around the US. They usually have guest speakers, lunch, and all of the different vendors with free stuff for families with CF.

We got the priviledge of having Ana & Isa, the two Japanese twins who wrote a book " The Power of Two~A Twin Triumph Over Cystic Fibrosis" come and speak and sign copies of their books. We also got to have Dr. Preston Campbell speak to us. Dr. Campbell went over the drugs that are in clinical trials that you can find on CFF.org and what each one will do for CF. There were a few that seemed very promising such as VX-770 and PS124.

I was just curious if there are any other centers that do this for the patients and their families. After leaving I really felt that in the next 10-15 years there will be a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">

JennyCoulon · May 19, 2008

I was just wondering if any of you have an Annual CF Family Education Day that is offered by your pulmonary clinic docs? We have one every year, this years' was just this past Saturday. It is day for people with or families of someone with CF to see how our clinic is ranked as far as BMI, clinic visits, weight gain, etc compared to other CF clinics around the US. They usually have guest speakers, lunch, and all of the different vendors with free stuff for families with CF.
<br />
<br />We got the priviledge of having Ana & Isa, the two Japanese twins who wrote a book " The Power of Two~A Twin Triumph Over Cystic Fibrosis" come and speak and sign copies of their books. We also got to have Dr. Preston Campbell speak to us. Dr. Campbell went over the drugs that are in clinical trials that you can find on CFF.org and what each one will do for CF. There were a few that seemed very promising such as VX-770 and PS124.
<br />
<br />I was just curious if there are any other centers that do this for the patients and their families. After leaving I really felt that in the next 10-15 years there will be a cure for CF. <img src="i/expressions/face-icon-small-happy.gif" border="0">

MargaritaChic · May 19, 2008

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennyCoulon</b></i>
There were a few that seemed very promising such as VX-770 and PS124.
</end quote></div>

Hi. I think the drug you mean is PTC124.

Emma is only 5 months old, so we have not attended one yet. But I will definately be attending one in the future! I am glad to hear it brought you hope. <img src="i/expressions/face-icon-small-smile.gif" border="0">

MargaritaChic · May 19, 2008

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennyCoulon</b></i>
There were a few that seemed very promising such as VX-770 and PS124.
</end quote></div>

Hi. I think the drug you mean is PTC124.

Emma is only 5 months old, so we have not attended one yet. But I will definately be attending one in the future! I am glad to hear it brought you hope. <img src="i/expressions/face-icon-small-smile.gif" border="0">

MargaritaChic · May 19, 2008

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennyCoulon</b></i>
There were a few that seemed very promising such as VX-770 and PS124.
</end quote></div>

Hi. I think the drug you mean is PTC124.

Emma is only 5 months old, so we have not attended one yet. But I will definately be attending one in the future! I am glad to hear it brought you hope. <img src="i/expressions/face-icon-small-smile.gif" border="0">

MargaritaChic · May 19, 2008

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennyCoulon</b></i>
There were a few that seemed very promising such as VX-770 and PS124.
</end quote>

Hi. I think the drug you mean is PTC124.

Emma is only 5 months old, so we have not attended one yet. But I will definately be attending one in the future! I am glad to hear it brought you hope. <img src="i/expressions/face-icon-small-smile.gif" border="0">

MargaritaChic · May 19, 2008

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JennyCoulon</b></i>
<br />There were a few that seemed very promising such as VX-770 and PS124.
<br /></end quote>
<br />
<br />Hi. I think the drug you mean is PTC124.
<br />
<br />
<br />Emma is only 5 months old, so we have not attended one yet. But I will definately be attending one in the future! I am glad to hear it brought you hope. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />

Mommafirst · May 19, 2008

We have them in April. My husband and I have attended the last two years and we found it very enlightening and helpful. We have a very similar program.

Mommafirst · May 19, 2008

We have them in April. My husband and I have attended the last two years and we found it very enlightening and helpful. We have a very similar program.

Mommafirst · May 19, 2008

We have them in April. My husband and I have attended the last two years and we found it very enlightening and helpful. We have a very similar program.

Mommafirst · May 19, 2008

We have them in April. My husband and I have attended the last two years and we found it very enlightening and helpful. We have a very similar program.

Mommafirst · May 19, 2008

We have them in April. My husband and I have attended the last two years and we found it very enlightening and helpful. We have a very similar program.

MYBOY · May 19, 2008