Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 > > > From: n_cottrill <n_cottrill@...> > Subject: blepharophimosis USA Meeting > blepharophimosis > Date: Monday, January 12, 2009, 11:43 PM > > > > > > > I was just wondering if there is ever a US meeting, or if there ever > has been one! Someone should set one up, I always see other countries > having them, and Im kinda Jealous, haha!! I would love to meet other, > and Im sure my husband and daughter would too (since they are the ones > with BPES)!! > > Just wondering! > > Nancie > Hi Nancie, I tried to set one up last year,the response was minimal. I got about 10 responses. It seemed that timing and the economy were the major factors in not having one. I agree it is a great idea and I too would love to meet others whom have went thru the same things as my family and I. Let me know what I can do to help! Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 My sister and I would love a meeting too. I live in Ky. My sister lives in Indiana. From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 We would love a USA meeting. My husband and 1 1/2 yr old son both have BPES and we live in Sacramento, CA. From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 We live in Fort Wayne, Indiana Nicki Venable From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of shirley cooper Sent: Wednesday, January 14, 2009 10:28 AM To: blepharophimosis Subject: Re: blepharophimosis USA Meeting My sister and I would love a meeting too. I live in Ky. My sister lives in Indiana. --- On Wed, 1/14/09, kellymconover <kellymconover > wrote: From: kellymconover <kellymconover > Subject: Re: blepharophimosis USA Meeting blepharophimosis Date: Wednesday, January 14, 2009, 6:20 AM I would love a meeting too. My one year old daughter has BPES. We live in Jersey Sent from my Verizon Wireless BlackBerry From: Ball Date: Tue, 13 Jan 2009 11:24:56 -0800 (PST) <blepharophimosis@ groups. com> Subject: Re: blepharophimosis USA Meeting I would love a usa meeting my son amd i have BPES we live in Austin tx anyone close --- On Mon, 1/12/09, n_cottrill <n_cottrill (DOT) com> wrote: From: n_cottrill <n_cottrill (DOT) com> Subject: blepharophimosis USA Meeting blepharophimosis Date: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!! Just wondering! Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 We live in Chicago, IL and a US meeting would be great. our 2 year-old has BPES. --Anne Weber--Chicago, IL USA From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 I would love to attend a meeting in the USA also; I live in Iowa; my daughter is either in Ohio or Iowa. Cheryl Vahl Iowa City IA USA cheryl-vahl@... > > > From: n_cottrill <n_cottrill (DOT) com> > Subject: blepharophimosis USA Meeting > blepharophimosis > Date: Monday, January 12, 2009, 11:43 PM > > > > > I was just wondering if there is ever a US meeting, or if there ever > has been one! Someone should set one up, I always see other countries > having them, and Im kinda Jealous, haha!! I would love to meet other, > and Im sure my husband and daughter would too (since they are the ones > with BPES)!! > > Just wondering! > > Nancie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 They had a meeting in st louis missouri almost 12 yrs ago when my daugher was only like 10 mos..I would love to have another one also...my daugher was too young...she is going on 12 now. We are from central Illinois. From: shirley cooper <windyoakspoultry@...>blepharophimosis Sent: Wednesday, January 14, 2009 9:28:05 AMSubject: Re: blepharophimosis USA Meeting My sister and I would love a meeting too. I live in Ky. My sister lives in Indiana. From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 We are in Ohio--I would be interested to From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 We are in NH- I would also be interested From: Steph Lowe <jesszach123@...>blepharophimosis Sent: Wednesday, January 14, 2009 7:57:50 PMSubject: Re: blepharophimosis USA Meeting We are in Ohio--I would be interested to From: n_cottrill <n_cottrill (DOT) com>Subject: blepharophimosis USA MeetingblepharophimosisDate: Monday, January 12, 2009, 11:43 PM I was just wondering if there is ever a US meeting, or if there ever has been one! Someone should set one up, I always see other countries having them, and Im kinda Jealous, haha!! I would love to meet other, and Im sure my husband and daughter would too (since they are the ones with BPES)!!Just wondering!Nancie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2009 Report Share Posted January 15, 2009 I live in Indiana also. I can set it up if anyone is interested in having a meeting in Indianapolis. Let me know. Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Hi Our family would be very interested in attending a banquet. Where would it be held? In the USA?Thanks Sent from my Verizon Wireless BlackBerryFrom: Murray <michelle888_99@...>Date: Thu, 17 Dec 2009 10:06:53 -0800 (PST)<blepharophimosis >Subject: blepharophimosis USA Meeting Hi group! I am not sure about last year, but 2 months ago I asked if anyone was interested in a meeting. A banquet, with Dr's and information, genetisits, etc. I am in the beginning stages of planning this. If there is anyone already doing this I would love to talk to them so maybe we can combine our efforts. I am looking at October of next year, hopefully. It is a lot of work to find specialists and ones who are willing to help out. Everyone has a price. This meeting, persay, would include a banquet, dinner, entertainment, special guests, pre-dinner will be stations for people to go and get information etc. Thanks, Murray OXO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2009 Report Share Posted December 18, 2009 I am also extremely interested From: "ktahern@..." <ktahern@...>blepharophimosis Sent: Thu, December 17, 2009 2:59:27 PMSubject: Re: blepharophimosis USA Meeting Hi Our family would be very interested in attending a banquet. Where would it be held? In the USA?Thanks Sent from my Verizon Wireless BlackBerry From: Murray <michelle888_ 99 (DOT) com> Date: Thu, 17 Dec 2009 10:06:53 -0800 (PST) <blepharophimosis> Subject: blepharophimosis USA Meeting Hi group! I am not sure about last year, but 2 months ago I asked if anyone was interested in a meeting. A banquet, with Dr's and information, genetisits, etc. I am in the beginning stages of planning this. If there is anyone already doing this I would love to talk to them so maybe we can combine our efforts. I am looking at October of next year, hopefully. It is a lot of work to find specialists and ones who are willing to help out. Everyone has a price. This meeting, persay, would include a banquet, dinner, entertainment, special guests, pre-dinner will be stations for people to go and get information etc. Thanks, Murray OXO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2009 Report Share Posted December 18, 2009 I would love to attend; and possibly my daughter too. Summer of 2011 in Colorado? I’m in Iowa City IA and would love to meet folks. Thanks Cheryl Vahl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2009 Report Share Posted December 18, 2009 Cheryl - We are also located in Iowa. Do you see the dr's at U of I Hospitals? We see Dr. Nerad. Thanks. Dana From: Vahl, Cheryl <cheryl-vahl@...>Subject: blepharophimosis Re: USA Meetingblepharophimosis Date: Friday, December 18, 2009, 11:39 AM I would love to attend; and possibly my daughter too. Summer of 2011 in Colorado? I’m in Iowa City IA and would love to meet folks. Thanks Cheryl Vahl Quote Link to comment Share on other sites More sharing options...
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