Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 I wrote in to OPRAH about 1 1/2 years ago to see if we could do a show on CHARGE to make people aware of this syndrome, but the response I got was that it wasn`t well enough known and it would take to long to explain what CHARGE was and would most likely confuse the audience, so therefore it wasn`t a show that would be good for OPRAH. But it might be a good thing to try again now. Debbie, Mom to Susie, 3 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 Hi , I think what might workmis if we get all the families on this list to sign an e-mail to Oprah and then send it in we might get a better response, or one could be written up and we could sign it at the 2001 conference and all who can`t attend can an e-mail attached to it, just telling their childs story, I think that if we all told our story and sent it in there wouldn`t be a caring person able to ignore our children. Debbie, mom to Susie, 3 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 I do agree,that if we all get something togeather of our children's story then we will be heard better as a group then just one voice...I've been working on my daughter's story for the last two years,and now in the first steps of getting it published..as I felt getting a book out of a child with something that's not well known has been important to me for years now... So if others are willing to get a story about their child togeather..it doesn't have to be a book like mine,even a discription of their childs life,and what we go through as mothers and parents with our kids,and what all our kids have gone through...then by the time of the Indiana conference we should have enough stories to put togeather...and those that can't make the conference if you would like to write something on email,we could put them with what we collect..... If this is what you all would like to see happen please respond....let help get this syndrome noticed.. --- Debcachia@... wrote: > Hi , I think what might workmis if we get all > the families on this list > to sign an e-mail to Oprah and then send it in we > might get a better > response, or one could be written up and we could > sign it at the 2001 > conference and all who can`t attend can an e-mail > attached to it, just > telling their childs story, I think that if we all > told our story and sent it > in there wouldn`t be a caring person able to ignore > our children. > Debbie, mom to Susie, 3 years old. > > -------------------------- eGroups Sponsor > > " 5th CHARGE Syndrome International Conference, > Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in > CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the > newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 HELLO ALL! Last night I sat down and read some of my emails. I feel so totally overwhelmed at times when I read all that is occurring! Please remember, I am only associated with CHARGE because my Great-neice was born on October 13, 2000 and she was diagnosed with CHARGE. I live across the country from her and I only know Rose is "holding her own", at this time. [i am very ignorant of the syndrome!] However, I believe information is an incredible tool. My first thought of publication was Oprah, I was disappointed at the emails that followed from people that had already attempted to have Oprah do a "show" on CHARGE. There is another person, though. Has any one ever contacted Rosie O'Donnel? She is very much "into" children. I think it's so important that people learn about CHARGE! Many of you have been living your lives with CHARGE for. However, some of us, are just now learning and it's such a mystery that continues to grow as more emails are read! I agree, I think we should all email Oprah as well as Rosie and perhaps, with enough support, one or both will do a "show" on these special people. Ralston wrote: I do agree,that if we all get something togeather of our children's story then we will be heard better as a group then just one voice...I've been working on my daughter's story for the last two years,and now in the first steps of getting it published..as I felt getting a book out of a child with something that's not well known has been important to me for years now... So if others are willing to get a story about their child togeather..it doesn't have to be a book like mine,even a discription of their childs life,and what we go through as mothers and parents with our kids,and what all our kids have gone through...then by the time of the Indiana conference we should have enough stories to put togeather...and those that can't make the conference if you would like to write something on email,we could put them with what we collect..... If this is what you all would like to see happen please respond....let help get this syndrome noticed.. --- Debcachia@... wrote: > Hi , I think what might workmis if we get all > the families on this list > to sign an e-mail to Oprah and then send it in we > might get a better > response, or one could be written up and we could > sign it at the 2001 > conference and all who can`t attend can an e-mail > attached to it, just > telling their childs story, I think that if we all > told our story and sent it > in there wouldn`t be a caring person able to ignore > our children. > Debbie, mom to Susie, 3 years old. > > -------------------------- eGroups Sponsor > > "5th CHARGE Syndrome International Conference, > Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in > CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the > newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2000 Report Share Posted November 13, 2000 Good morning all... Just catching up on lots of emails or I would have responded to this thread earlier. The board has an idea about a possibility for the Oprah show so don't despair and let's don't jump the gun. At our last full board meeting in Indy the idea was tossed about that the way to reach Oprah is through her new Angel Network nominations. We think that the way to get some exposure might be by nominating n. We wouldn't exist as a Foundation except for her many hours of dedication and especially those in the very beginning years when there was no organization or awareness at all. The history of how the Foundation was " founded " is really interesting and she and her husband, Lee, gave tirelessly of their time and resources. The work has actually begun on this project with Dr. Jim Thelin working on the historical piece of the application. He was there from the very beginning and played a critical role in how we began. A great addition to that submission would be personal stories, about your child with CHARGE and especially if you have some special story about n and how she and the Foundation have touched your lives. If this plan were to be successful it would accomplish some great things including awareness for CHARGE Syndrome and the Foundation, funds for the Foundation and much deserved recognition for n! So, why don't you write your comments down and send them to me (email privately or snail mail). Please keep them to less than one page so the application can be uniform and less overwhelming to the reviewers. If there is no real place to include them, we'll just scrapbook them and send them separately! All of our efforts to increase awareness are important...big ones like this and when you tell just one more person about CHARGE Syndrome. Thanks for all that each of you does for all our children! Brownie Shott btshott@... 3502 Windmoor Drive Katy, TX 77449 Quote Link to comment Share on other sites More sharing options...
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