CF Teen Sibling Advocacy Day

C

CFHockeyMom

New member
Hi All,

Just wanted to let you know that our older son Neil is heading to DC to represent his brother, Sean, and everyone else with CF as part of the CFF's Teen Sibling Advocacy day.

There are about 20 teen siblings participating and they will each be speaking to several Congressmen, Senators, and their staff about CF, it's impact on families, and how important access to clinical trials is.

Emily will also be joining the group! <img src="i/expressions/face-icon-small-happy.gif" border="0">

This is going to be a fun and exciting experience for all and we're really looking forward to it!!!
 
C

CFHockeyMom

New member
Hi All,

Just wanted to let you know that our older son Neil is heading to DC to represent his brother, Sean, and everyone else with CF as part of the CFF's Teen Sibling Advocacy day.

There are about 20 teen siblings participating and they will each be speaking to several Congressmen, Senators, and their staff about CF, it's impact on families, and how important access to clinical trials is.

Emily will also be joining the group! <img src="i/expressions/face-icon-small-happy.gif" border="0">

This is going to be a fun and exciting experience for all and we're really looking forward to it!!!
 
C

CFHockeyMom

New member
Hi All,
<br />
<br />Just wanted to let you know that our older son Neil is heading to DC to represent his brother, Sean, and everyone else with CF as part of the CFF's Teen Sibling Advocacy day.
<br />
<br />There are about 20 teen siblings participating and they will each be speaking to several Congressmen, Senators, and their staff about CF, it's impact on families, and how important access to clinical trials is.
<br />
<br />Emily will also be joining the group! <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />This is going to be a fun and exciting experience for all and we're really looking forward to it!!!
 
R

Rebjane

Super Moderator
Awesome! I think this is so fabulous. I hope that the issue of the FDA and getting our Pancreatic enzymes back on the market will be part of the discussion.
 
R

Rebjane

Super Moderator
Awesome! I think this is so fabulous. I hope that the issue of the FDA and getting our Pancreatic enzymes back on the market will be part of the discussion.
 
R

Rebjane

Super Moderator
Awesome! I think this is so fabulous. I hope that the issue of the FDA and getting our Pancreatic enzymes back on the market will be part of the discussion.
 
M

Mommafirst

Guest
This is so fantastic. Please report back how his trip went -- this must be so exciting.
 
M

Mommafirst

Guest
This is so fantastic. Please report back how his trip went -- this must be so exciting.
 
M

Mommafirst

Guest
This is so fantastic. Please report back how his trip went -- this must be so exciting.
 
I

izemmom

New member
This is very exciting! I hope the trip goes well. What an opportunity for those sibs! This is something I can see my older daughter doing someday. Although, I dearly hope she won't have to!
 
I

izemmom

New member
This is very exciting! I hope the trip goes well. What an opportunity for those sibs! This is something I can see my older daughter doing someday. Although, I dearly hope she won't have to!
 
I

izemmom

New member
This is very exciting! I hope the trip goes well. What an opportunity for those sibs! This is something I can see my older daughter doing someday. Although, I dearly hope she won't have to!
 
C

CFHockeyMom

New member
Here's a link to the article run in our local paper regarding Teen Sibling Advocacy Day, <a target=_blank class=ftalternatingbarlinklarge href="http://heritage.com/articles/2010/07/18/saline_reporter/news/doc4c43a309e23ad256293376.txt">Neil goes to DC</a>

The picture from left to right; Neil's dad, Neil, and Rep. Mark Schauer.

This was a great experience for Neil and I would encourage all of you with a CFer and a teen sibling to consider this next year.

Here are a few more links...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Publications/connections/July2010/Teens-Speak-Out.cfm">More info about teen sibling advocacy day</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/GetInvolved/Advocate/CFCaucus/#Congressional_Cystic_Fibrosis_Caucus_Membership">Find out if your members of the House/Senate are part of the CF Caucus</a>
 
C

CFHockeyMom

New member
Here's a link to the article run in our local paper regarding Teen Sibling Advocacy Day, <a target=_blank class=ftalternatingbarlinklarge href="http://heritage.com/articles/2010/07/18/saline_reporter/news/doc4c43a309e23ad256293376.txt">Neil goes to DC</a>

The picture from left to right; Neil's dad, Neil, and Rep. Mark Schauer.

This was a great experience for Neil and I would encourage all of you with a CFer and a teen sibling to consider this next year.

Here are a few more links...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Publications/connections/July2010/Teens-Speak-Out.cfm">More info about teen sibling advocacy day</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/GetInvolved/Advocate/CFCaucus/#Congressional_Cystic_Fibrosis_Caucus_Membership">Find out if your members of the House/Senate are part of the CF Caucus</a>
 
C

CFHockeyMom

New member
Here's a link to the article run in our local paper regarding Teen Sibling Advocacy Day, <a target=_blank class=ftalternatingbarlinklarge href="http://heritage.com/articles/2010/07/18/saline_reporter/news/doc4c43a309e23ad256293376.txt">Neil goes to DC</a>
<br />
<br />The picture from left to right; Neil's dad, Neil, and Rep. Mark Schauer.
<br />
<br />This was a great experience for Neil and I would encourage all of you with a CFer and a teen sibling to consider this next year.
<br />
<br />Here are a few more links...
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Publications/connections/July2010/Teens-Speak-Out.cfm">More info about teen sibling advocacy day</a>
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/GetInvolved/Advocate/CFCaucus/#Congressional_Cystic_Fibrosis_Caucus_Membership">Find out if your members of the House/Senate are part of the CF Caucus</a>
 
P

PatrickM

New member
Wow! Thanks for letting us know how it went and sending the link to the article. I have two boys as well, each a year younger than your boys, with the youngest having CF. You must be very proud of your son for taking part in the Teen Sibling Advocacy Day. I never knew there was such a thing until I read your post. Tell your son Neil thank you for advocating and sharing his story. That is something I would love to see my older son involved with next year. Great job!

Tara
 
P

PatrickM

New member
Wow! Thanks for letting us know how it went and sending the link to the article. I have two boys as well, each a year younger than your boys, with the youngest having CF. You must be very proud of your son for taking part in the Teen Sibling Advocacy Day. I never knew there was such a thing until I read your post. Tell your son Neil thank you for advocating and sharing his story. That is something I would love to see my older son involved with next year. Great job!

Tara
 
P

PatrickM

New member
Wow! Thanks for letting us know how it went and sending the link to the article. I have two boys as well, each a year younger than your boys, with the youngest having CF. You must be very proud of your son for taking part in the Teen Sibling Advocacy Day. I never knew there was such a thing until I read your post. Tell your son Neil thank you for advocating and sharing his story. That is something I would love to see my older son involved with next year. Great job!
<br />
<br />Tara
 
P

PatrickM

New member
I just want to add one more thing. ;-) I just watched the link where it says "more info about teen advocacy day" and there is a video of some teens that are there to represent their siblings. It brought tears to my eyes. I spend so much time worrying about my son with CF that sometimes I forget how it effects his older brother. I am so proud of all those teens that represented their siblings/cousins. That takes courage and it is wonderful to see this younger generation involved and advocating for CF. Thank you all!
 
P

PatrickM

New member
I just want to add one more thing. ;-) I just watched the link where it says "more info about teen advocacy day" and there is a video of some teens that are there to represent their siblings. It brought tears to my eyes. I spend so much time worrying about my son with CF that sometimes I forget how it effects his older brother. I am so proud of all those teens that represented their siblings/cousins. That takes courage and it is wonderful to see this younger generation involved and advocating for CF. Thank you all!
 
You must log in or register to reply here.
Top