Jack's original post Re: YouTube

[Guest guest]

Hi everyone,

Here is Jack's original post regarding setting up a YouTube or MySpace account to gain publicity for pulmonary fibrosis issues. This is an idea definitely worthy of further exploration. I have a YouTube account myself. They are easy to set up and maintain. I'm less familiar with MySpace but how difficult could it be? I'd like to talk to Leanne to get her thoughts. Ideally I'd like to see the MySpace set up in the name of the Foundation. That would automatically get it the credibility we would want. I'm talking in theory here obviously. There would be quite a bit of time and work to get this set up. I will talk to Leanne about it this week and see what she thinks.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Yesterday my daughter gave me a full discourse on how to get public attention to a dreadful medical situation. She is in the process of organizing a national group to gain broader recognition of the huge number of children and young adults who suffer the numerous and dreadful effects of Agent Orange in hopes that the Government will provide more monies for research and care.

Briefly, her husband died at age 55 from illnesses caused by exposure to Agent Orange in Vietnam. Her two daughters also are seriously effected, as well as her two grandchildren.

Because she has little money to do this, she has started out with YouTube and MySpace which are free. You can access these at www.dovv.net(Daughters of Vietnam Veterans) and www.neilmed.com/usa/index.phd.

Individuals are able to add their stories and post photos to each. Both sites get many hits.

It occured to me that this might be something we, as a group, could do. Hopefully, one of use has the computer skill and time to create the site and educate the rest of us on how to post our personal stories.

I lack the computer skills and lack the time as long as I continue manage my company. Hopefully that will end before I do and leave me time for things like this.

It will be interesting to read your responses. Jack79/IPF - UIP/dx06/05 Maine

[Guest guest]

Who knows MB... this may be the start of something big!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Jack's original post Re: YouTube

Hi everyone,

Here is Jack's original post regarding setting up a YouTube or MySpace account to gain publicity for pulmonary fibrosis issues. This is an idea definitely worthy of further exploration. I have a YouTube account myself. They are easy to set up and maintain. I'm less familiar with MySpace but how difficult could it be? I'd like to talk to Leanne to get her thoughts. Ideally I'd like to see the MySpace set up in the name of the Foundation. That would automatically get it the credibility we would want. I'm talking in theory here obviously. There would be quite a bit of time and work to get this set up. I will talk to Leanne about it this week and see what she thinks.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Yesterday my daughter gave me a full discourse on how to get public attention to a dreadful medical situation. She is in the process of organizing a national group to gain broader recognition of the huge number of children and young adults who suffer the numerous and dreadful effects of Agent Orange in hopes that the Government will provide more monies for research and care.

Briefly, her husband died at age 55 from illnesses caused by exposure to Agent Orange in Vietnam. Her two daughters also are seriously effected, as well as her two grandchildren.

Because she has little money to do this, she has started out with YouTube and MySpace which are free. You can access these at www.dovv.net(Daughters of Vietnam Veterans) and www.neilmed.com/usa/index.phd.

Individuals are able to add their stories and post photos to each. Both sites get many hits.

It occured to me that this might be something we, as a group, could do. Hopefully, one of use has the computer skill and time to create the site and educate the rest of us on how to post our personal stories.

I lack the computer skills and lack the time as long as I continue manage my company. Hopefully that will end before I do and leave me time for things like this.

It will be interesting to read your responses. Jack79/IPF - UIP/dx06/05 Maine

[Guest guest]

MB, I still have the video the paper did. Think it would be good enough to put on u tube? Maybe I'll try it.Love  & Prayers, PeggyFlorida,  IPF/UIP"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Who knows MB... this may be the start of something big!  MamaSher, age 70. IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there!  Jack's original post Re: YouTubeHi everyone,Here is Jack's original post regarding setting up a YouTube or MySpace account to gain publicity for pulmonary fibrosis issues. This is an idea definitely worthy of further exploration. I have a YouTube account myself. They are easy to set up and maintain. I'm less familiar with MySpace but how difficult could it be?  I'd like to talk to Leanne to get her thoughts. Ideally I'd like to see the MySpace set up in the name of the Foundation. That would automatically get it the credibility we would want. I'm talking in theory here obviously. There would be quite a bit of time and work to get this set up. I will talk to Leanne about it this week and see what she thinks.  Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive          Yesterday my daughter gave me a full discourse on how to get public attention to a dreadful medical situation.  She is in the process of organizing a national group to gain broader recognition of the huge number of children and young adults who suffer the numerous and dreadful effects of Agent Orange in hopes that the Government will provide more monies for research and care. Briefly, her husband died at age 55 from illnesses caused by exposure to Agent Orange in Vietnam.  Her two daughters also are seriously effected, as well as her two grandchildren. Because she has little money to do this, she has started out with YouTube and MySpace which are free.  You can access these at www.dovv.net(Daughters of Vietnam Veterans) and www.neilmed.com/usa/index.phd. Individuals are able to add their stories and post photos to each.  Both sites get many hits. It occured to me that this might be something we, as a group, could do.  Hopefully, one of use has the computer skill and time to create the site and educate the rest of us on how to post our personal stories. I lack the computer skills and lack the time as long as I continue manage my company.  Hopefully that will end before I do and leave me time for things like this. It will be interesting to read your responses. Jack79/IPF - UIP/dx06/05 Maine  

[Guest guest]

Beth, I like your ideas and I think a Foundation sponsorship would give great credibility and help the Foundation as well. It could also ask for donations. What I think is the most sympathetic approach is to let people with PF post their own stories, briefly of course, and pics. Since so few people are aware of this disease and unlikely to even know someone who has it, our individual stories and pics would personalize it for them.

I'm sure as the group members think about it in conjunction with their personal situastion that ideas will flow from all. Jack79/IPF - UIP/dx06/05 Maine

Jack's original post Re: YouTube

Hi everyone,

Here is Jack's original post regarding setting up a YouTube or MySpace account to gain publicity for pulmonary fibrosis issues. This is an idea definitely worthy of further exploration. I have a YouTube account myself. They are easy to set up and maintain. I'm less familiar with MySpace but how difficult could it be? I'd like to talk to Leanne to get her thoughts. Ideally I'd like to see the MySpace set up in the name of the Foundation. That would automatically get it the credibility we would want. I'm talking in theory here obviously. There would be quite a bit of time and work to get this set up. I will talk to Leanne about it this week and see what she thinks.

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Yesterday my daughter gave me a full discourse on how to get public attention to a dreadful medical situation. She is in the process of organizing a national group to gain broader recognition of the huge number of children and young adults who suffer the numerous and dreadful effects of Agent Orange in hopes that the Government will provide more monies for research and care.

Briefly, her husband died at age 55 from illnesses caused by exposure to Agent Orange in Vietnam. Her two daughters also are seriously effected, as well as her two grandchildren.

Because she has little money to do this, she has started out with YouTube and MySpace which are free. You can access these at www.dovv.net(Daughters of Vietnam Veterans) and www.neilmed. com/usa/index. phd.

Individuals are able to add their stories and post photos to each. Both sites get many hits.

It occured to me that this might be something we, as a group, could do. Hopefully, one of use has the computer skill and time to create the site and educate the rest of us on how to post our personal stories.

I lack the computer skills and lack the time as long as I continue manage my company. Hopefully that will end before I do and leave me time for things like this.

It will be interesting to read your responses. Jack79/IPF - UIP/dx06/05 Maine