Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hi all, i need your opinion regarding the next year conference. We want to go, and i'd like to buy plane tickets asap, our problem is Helena. Next year she will have only 2 years old, and we have a 16 hour trip at least until California. Our doubt is knowing if her presence is fundamental, or even if we decide to go without her, should the conference be effective for us parents? How do conferences normally ocur? Best regards Hugo Father of Helena _______________________________________________________ Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. Registre seu aparelho agora! http://br.mobile.yahoo.com/mailalertas/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 HI Hugo... My name is Belinda i am from Australia with CHARGE syndrome.....i am 23..Last year i attended the conference and found it invaluable...IT is very good for parents to go as you will get comments saying.. Not just the conference imformation itself, but meeting other parents and professionals is great.. you really will feel like part of a family... As for your daughter, they have great child care thing over there with the conference.. ..Last time they had lots of things planned for all the kids with and without charge syndrome and they had lots of fun... What country are you from? I am defeitnlyu planning to go next year Belinda 23 yr old CHARGEr > > Hi all, > > i need your opinion regarding the next year > conference. > > We want to go, and i'd like to buy plane tickets asap, > our problem is Helena. Next year she will have only 2 > years old, and we have a 16 hour trip at least until > California. > > Our doubt is knowing if her presence is fundamental, > or even if we decide to go without her, should the > conference be effective for us parents? > > How do conferences normally ocur? > > Best regards > > Hugo > > Father of Helena > > > _______________________________________________________ > Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. > Registre seu aparelho agora! > http://br.mobile.yahoo.com/mailalertas/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hugo, If you can't bring Helena, you will still get A LOT from the conference. I have gone to four without my daughter (I'm HOPING to maybe bring her next year) and I can't imagine missing one. You will love it, learn much, and meet great people who understand your life . Hope you can go, www.chargesyndrome.info > > HI Hugo... > > My name is Belinda i am from Australia with CHARGE syndrome.....i am > 23..Last year i attended the conference and found it invaluable...IT is > very > good for parents to go as you will get comments saying.. Not just the > conference imformation itself, but meeting other parents and professionals > is great.. you really will feel like part of a family... > > As for your daughter, they have great child care thing over there with the > conference.. ..Last time they had lots of things planned for all the kids > with and without charge syndrome and they had lots of fun... > > What country are you from? I am defeitnlyu planning to go next year > > Belinda 23 yr old CHARGEr > > On 10/24/06, hugo rosa <hrosa_pt@... <hrosa_pt%40yahoo.com>> wrote: > > > > Hi all, > > > > i need your opinion regarding the next year > > conference. > > > > We want to go, and i'd like to buy plane tickets asap, > > our problem is Helena. Next year she will have only 2 > > years old, and we have a 16 hour trip at least until > > California. > > > > Our doubt is knowing if her presence is fundamental, > > or even if we decide to go without her, should the > > conference be effective for us parents? > > > > How do conferences normally ocur? > > > > Best regards > > > > Hugo > > > > Father of Helena > > > > > > _______________________________________________________ > > Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu > celular. > > Registre seu aparelho agora! > > http://br.mobile.yahoo.com/mailalertas/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I think at two she might not get anything out of the conferece. if you feel you can leave her with your parents for the 4 or 5 days then maby that might be better cause you may worry less then if she is in the kids care area. Personaly I would leave her with family cause she is so much younger and its expencive to get helth insurance for that age. iif she gets sick or something at your parents, you dont have to worry as much as having to pay hundreds of dollars in an american hospital. Hugs Chantelle -- My spelling's kinda wobbly. It's good spelling but the letters wobble and end up in the wrong places. - Winnie the Pooh My Blog Space: http://neutralufo.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I did not take , my CHARGEr, to any of the conferences, however, I took a different child each time for different reasons. ( is very difficult to travel with.) I feel like the conference was for me and I did not want distractions with young children. We are hoping that the entire family can go to California and there should be enough adults in my family to manage with the children. Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4 tomorrow!) Dallas, Texas Next year conference Hi all, i need your opinion regarding the next year conference. We want to go, and i'd like to buy plane tickets asap, our problem is Helena. Next year she will have only 2 years old, and we have a 16 hour trip at least until California. Our doubt is knowing if her presence is fundamental, or even if we decide to go without her, should the conference be effective for us parents? How do conferences normally ocur? Best regards Hugo Father of Helena _______________________________________________________ Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. Registre seu aparelho agora! http://br.mobile.yahoo.com/mailalertas/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hi all, Answering Belinda question, we are from Portugal, the most western country of Europe. I´d like to thank all the replys to my mail. After talking with my wife, we will book plane tickets as soon as possible. Helena will stay with her grandparents, but we expect to have her with us in the 2009 Conference. I hope that in 2009 the conference happens in the East Coast of US (less plane hours for Europeans). I have a question, does any body know how many Europeans are registered in the CHARGE group? For when a Conference in Europe? Best regards Hugo Father of Helena (19 months) --- _Belinda _ escreveu: > HI Hugo... > > My name is Belinda i am from Australia with CHARGE > syndrome.....i am > 23..Last year i attended the conference and found it > invaluable...IT is very > good for parents to go as you will get comments > saying.. Not just the > conference imformation itself, but meeting other > parents and professionals > is great.. you really will feel like part of a > family... > > As for your daughter, they have great child care > thing over there with the > conference.. ..Last time they had lots of things > planned for all the kids > with and without charge syndrome and they had lots > of fun... > > What country are you from? I am defeitnlyu planning > to go next year > > Belinda 23 yr old CHARGEr > > > > > > Hi all, > > > > i need your opinion regarding the next year > > conference. > > > > We want to go, and i'd like to buy plane tickets > asap, > > our problem is Helena. Next year she will have > only 2 > > years old, and we have a 16 hour trip at least > until > > California. > > > > Our doubt is knowing if her presence is > fundamental, > > or even if we decide to go without her, should the > > conference be effective for us parents? > > > > How do conferences normally ocur? > > > > Best regards > > > > Hugo > > > > Father of Helena > > > > > > > _______________________________________________________ > > Novidade no Yahoo! Mail: receba alertas de novas > mensagens no seu celular. > > Registre seu aparelho agora! > > http://br.mobile.yahoo.com/mailalertas/ > > > > > > > > > > > [Non-text portions of this message have been > removed] > > _______________________________________________________ Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. Registre seu aparelho agora! http://br.mobile.yahoo.com/mailalertas/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hugo, i dont think there are alot of people in Europe registered with the US association although there are a ffew...There were a few people form there at the conference last year Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hugo, First, how wonderful that we may meet you in person!!! And...make sure you bring pictures of the lovely Helena and the rest of your family! I suspect that n Norbury will step in and answer your question about how many European members are " with " us--she is the keeper of all those facts. pam Re: Next year conference Hi all, Answering Belinda question, we are from Portugal, the most western country of Europe. I´d like to thank all the replys to my mail. After talking with my wife, we will book plane tickets as soon as possible. Helena will stay with her grandparents, but we expect to have her with us in the 2009 Conference. I hope that in 2009 the conference happens in the East Coast of US (less plane hours for Europeans). I have a question, does any body know how many Europeans are registered in the CHARGE group? For when a Conference in Europe? Best regards Hugo Father of Helena (19 months) --- _Belinda _ escreveu: > HI Hugo... > > My name is Belinda i am from Australia with CHARGE > syndrome.....i am > 23..Last year i attended the conference and found it > invaluable...IT is very > good for parents to go as you will get comments > saying.. Not just the > conference imformation itself, but meeting other > parents and professionals > is great.. you really will feel like part of a > family... > > As for your daughter, they have great child care > thing over there with the > conference.. ..Last time they had lots of things > planned for all the kids > with and without charge syndrome and they had lots > of fun... > > What country are you from? I am defeitnlyu planning > to go next year > > Belinda 23 yr old CHARGEr > > > > > > Hi all, > > > > i need your opinion regarding the next year > > conference. > > > > We want to go, and i'd like to buy plane tickets > asap, > > our problem is Helena. Next year she will have > only 2 > > years old, and we have a 16 hour trip at least > until > > California. > > > > Our doubt is knowing if her presence is > fundamental, > > or even if we decide to go without her, should the > > conference be effective for us parents? > > > > How do conferences normally ocur? > > > > Best regards > > > > Hugo > > > > Father of Helena > > > > > > > _______________________________________________________ > > Novidade no Yahoo! Mail: receba alertas de novas > mensagens no seu celular. > > Registre seu aparelho agora! > > http://br.mobile.yahoo.com/mailalertas/ > > > > > > > > > > > [Non-text portions of this message have been > removed] > > _______________________________________________________ Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. Registre seu aparelho agora! http://br.mobile.yahoo.com/mailalertas/ CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Thanks, Pam. I was flagging messages as I read them this morning. Here are some figures on Foundation membership and Conference attendance. Currently we have 28 members from other countries around the world - 12 of these are professionals or organization memberships. In Europe we have 11 members. There were 17 more international members in 2005 who have not renewed their membership this year. :-( At the 2005 Conference in Miami Beach, we had 14 countries represented including the U.S. with a total of 54 persons from outside the U.S. There were 10 family members and 8 professionals from European countries. Canada had the most attendees. *For everyone who is planning to attend the conference in 2007, the Fall Issue of CHARGE Accounts was mailed to current members 2+ weeks ago. There was information in it about the costs for the conference, hotel, etc. plus the application for the scholarship for families attending their first CHARGE Syndrome Conference. Please email me if you have other questions about the conference or membership in the Foundation.* n marion@... pamela.ryan@... wrote: > > Hugo, > First, > how wonderful that we may meet you in person!!! And...make sure you > bring pictures of the lovely Helena and the rest of your family! > I suspect that n Norbury will step in and answer your question > about how many European members are " with " us--she is the keeper of > all those facts. > pam > > Re: Next year conference > > Hi all, > > Answering Belinda question, we are from Portugal, the > most western country of Europe. > > I´d like to thank all the replys to my mail. After > talking with my wife, we will book plane tickets as > soon as possible. Helena will stay with her > grandparents, but we expect to have her with us in the > 2009 Conference. I hope that in 2009 the conference > happens in the East Coast of US (less plane hours for > Europeans). > > I have a question, does any body know how many > Europeans are registered in the CHARGE group? > For when a Conference in Europe? > > Best regards > > Hugo > Father of Helena (19 months) > > - > > > -- n A Norbury, Executive Director CHARGE Syndrome Foundation Inc 409 Vandiver Dr Ste 5-104 Columbia MO 65202-1563 voice/fax; families email: marion@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 See, you are Queen of all the Facts. xo pam Re: Next year conference > > Hi all, > > Answering Belinda question, we are from Portugal, the > most western country of Europe. > > I´d like to thank all the replys to my mail. After > talking with my wife, we will book plane tickets as > soon as possible. Helena will stay with her > grandparents, but we expect to have her with us in the > 2009 Conference. I hope that in 2009 the conference > happens in the East Coast of US (less plane hours for > Europeans). > > I have a question, does any body know how many > Europeans are registered in the CHARGE group? > For when a Conference in Europe? > > Best regards > > Hugo > Father of Helena (19 months) > > - > > > -- n A Norbury, Executive Director CHARGE Syndrome Foundation Inc 409 Vandiver Dr Ste 5-104 Columbia MO 65202-1563 voice/fax; families email: marion@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2006 Report Share Posted November 2, 2006 Hi Hugo As ever I am way behind with my posts. At the last conference apart from my family (from the UK) there was a German mother with her daughter, a Belgian guy (who set the family group there). I do not recall any other families or parents from Europe but from n's list there must be 3 more people. Of the professionals 1 was from the UK, 1 from the Netherlands and 4 from France. I shall be going to Orange County but not with the family (much to the disappointment of many people on this this list). Like you there is the issue of the length of any flight but the cost of paying for 4 people to fly. I know that there another family from the UK who are interested in attending. If you are going I shall be pleased to see you. By the way are you interested in the details of another family on Portugal. I think I offered this before. Regards Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Hi Simon, thank you for the repply. I hope that in California we can have more European families and specialists. We've decided to go without children, so i'll go with my wife. I'm really interested in having the information about other family in Portugal, we don't have any local contacts of other families. Regards Hugo --- simon howard escreveu: > Hi Hugo > > As ever I am way behind with my posts. At the last > conference apart from my > family (from the UK) there was a German mother with > her daughter, a Belgian > guy (who set the family group there). I do not > recall any other families or > parents from Europe but from n's list there > must be 3 more people. > > Of the professionals 1 was from the UK, 1 from the > Netherlands and 4 from > France. > > I shall be going to Orange County but not with the > family (much to the > disappointment of many people on this this list). > Like you there is the > issue of the length of any flight but the cost of > paying for 4 people to > fly. I know that there another family from the UK > who are interested in > attending. > > If you are going I shall be pleased to see you. By > the way are you > interested in the details of another family on > Portugal. I think I offered > this before. > > Regards > > Simon > > > [Non-text portions of this message have been > removed] > > _______________________________________________________ Novidade no Yahoo! Mail: receba alertas de novas mensagens no seu celular. Registre seu aparelho agora! http://br.mobile.yahoo.com/mailalertas/ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.