Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 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 16, 2009 Report Share Posted January 16, 2009 we live in NYC Aedan is 6. In a message dated 1/16/2009 6:45:36 P.M. Eastern Standard Time, ndaiutolo@... writes: Hi there - I also live in New Jersey and would love to meet up with other families. My 9 month old son has BPES. Daiutolo - mom of From: highidream <highidream >Subject: blepharophimosis Re: USA Meetingblepharophimosis Date: Wednesday, January 14, 2009, 1:14 PM > > > 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 16, 2009 Report Share Posted January 16, 2009 Hi there - I also live in New Jersey and would love to meet up with other families. My 9 month old son has BPES. Daiutolo - mom of From: highidream <highidream@...>Subject: blepharophimosis Re: USA Meetingblepharophimosis Date: Wednesday, January 14, 2009, 1:14 PM > > > 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 18, 2009 Report Share Posted January 18, 2009 Aedan is our family's first too. He has an 11 year old sister , Raina. In a message dated 1/18/2009 11:39:16 A.M. Eastern Standard Time, debrayusko@... writes: We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it.Best, Debbie Fehl> > > From: highidream <highidream (DOT) hig>> Subject: blepharophimosis Re: USA Meeting> blepharophimosis@To:> Date: Wednesday, January 14, 2009, 1:14 PM> > > > > > > > > > From: n_cottrill <n_cottrill@ ...>> > Subject: blepharophimosis USA Meeting> > _blepharophimosis_ > (mailto: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 18, 2009 Report Share Posted January 18, 2009 We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it. Best, Debbie Fehl > > > From: highidream <highidream@...> > Subject: blepharophimosis Re: USA Meeting > blepharophimosis@ To: > Date: Wednesday, January 14, 2009, 1:14 PM > > > > > > > > > > From: n_cottrill <n_cottrill@ ...> > > Subject: blepharophimosis USA Meeting > > _blepharophimosis_ > (mailto: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 18, 2009 Report Share Posted January 18, 2009 I've seen several ppl close or in NJ NY....I live in arizona but my 3 boys spend summers wit their dad in NY.....2 of my sons have Blep and their dad does too...I know they would love a meetingSent on the Now Network™ from my Sprint® BlackBerryFrom: Debra Fehl Date: Sun, 18 Jan 2009 08:09:16 -0800 (PST)<blepharophimosis >Subject: Re: blepharophimosis Re: USA Meeting We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it. Best, Debbie Fehl > > > From: highidream <highidream (DOT) hig> > Subject: blepharophimosis Re: USA Meeting > blepharophimosis@> Date: Wednesday, January 14, 2009, 1:14 PM > > > > > > > > > > From: n_cottrill <n_cottrill@ ...> > > Subject: blepharophimosis USA Meeting > > _blepharophimosis_ > (mailto: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 18, 2009 Report Share Posted January 18, 2009 We live in Maplewood, NJ. My daughter, 12 yrs old, would love to meet another teen with BPES. Are there any of you out there?a Radding--mom of MargotOn Jan 18, 2009, at 11:09 AM, Debra Fehl wrote:We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it.Best, Debbie Fehl> > > From: highidream <highidream (DOT) hig>> Subject: blepharophimosis Re: USA Meeting> blepharophimosis@To:> Date: Wednesday, January 14, 2009, 1:14 PM> > > > > > > > > > From: n_cottrill <n_cottrill@ ...>> > Subject: blepharophimosis USA Meeting> > _blepharophimosis_ > (mailto: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 18, 2009 Report Share Posted January 18, 2009 We are from Illinois...but my daughter will be 12 in april and has bleph...the only one in the family. Maybe our girls could keep contact with oneanother. From: paula Radding <pradding@...>blepharophimosis Sent: Sunday, January 18, 2009 12:23:22 PMSubject: Re: blepharophimosis Re: USA Meeting We live in Maplewood, NJ. My daughter, 12 yrs old, would love to meet another teen with BPES. Are there any of you out there? a Radding--mom of Margot On Jan 18, 2009, at 11:09 AM, Debra Fehl wrote: We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it.Best, Debbie Fehl> > > From: highidream <highidream (DOT) hig>> Subject: blepharophimosis Re: USA Meeting> blepharophimosis@To:> Date: Wednesday, January 14, 2009, 1:14 PM> > > > > > > > > > From: n_cottrill <n_cottrill@ ...>> > Subject: blepharophimosis USA Meeting> > _blepharophimosis_ > (mailto: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 19, 2009 Report Share Posted January 19, 2009 That would be great! My daughter's name is Margot and her email is boomerpop@.... She's the only one in our family, too.On Sun, Jan 18, 2009 at 6:24 PM, Hood wrote:We are from Illinois...but my daughter will be 12 in april and has bleph...the only one in the family. Maybe our girls could keep contact with oneanother. ___________________________________From: paula Radding <praddingverizon (DOT) net> blepharophimosis Sent: Sunday, January 18, 2009 12:23:22 PM Subject: Re: blepharophimosis Re: USA Meeting We live in Maplewood, NJ. My daughter, 12 yrs old, would love to meet another teen with BPES. Are there any of you out there? a Radding--mom of Margot On Jan 18, 2009, at 11:09 AM, Debra Fehl wrote: We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it. Best, Debbie Fehl > > > From: highidream < highidream (DOT) hig> > Subject: blepharophimosis Re: USA Meeting > blepharophimosis@ > Date: Wednesday, January 14, 2009, 1:14 PM > > > > > > > > > > From: n_cottrill <n_cottrill@ ...> > > Subject: blepharophimosis USA Meeting > > _blepharophimosis_ > (mailto: blepharophimosisgroups (DOT) com ) > > 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 19, 2009 Report Share Posted January 19, 2009 My daughters name is and her email is Puddinpie1997@... From: "pradding@..." <pradding@...>blepharophimosis Sent: Monday, January 19, 2009 8:37:04 AMSubject: Re: blepharophimosis Re: USA Meeting That would be great! My daughter's name is Margot and her email is boomerpopverizon (DOT) net. She's the only one in our family, too. On Sun, Jan 18, 2009 at 6:24 PM, Hood wrote: We are from Illinois...but my daughter will be 12 in april and has bleph...the only one in the family. Maybe our girls could keep contact with oneanother. ____________ _________ _________ _____ From: paula Radding <praddingverizon (DOT) net> blepharophimosis Sent: Sunday, January 18, 2009 12:23:22 PM Subject: Re: blepharophimosis Re: USA Meeting We live in Maplewood, NJ. My daughter, 12 yrs old, would love to meet another teen with BPES. Are there any of you out there? a Radding--mom of Margot On Jan 18, 2009, at 11:09 AM, Debra Fehl wrote: We live in Somerset, NJ; about 30 miles from NYC. We would love to meet. My son, , is 4 1/2 years old and has BPES. Only one in the family with it. Best, Debbie Fehl > > > From: highidream < highidream (DOT) hig> > Subject: blepharophimosis Re: USA Meeting > blepharophimosis@ > Date: Wednesday, January 14, 2009, 1:14 PM > > > > > > > > > > From: n_cottrill <n_cottrill@ ...> > > Subject: blepharophimosis USA Meeting > > _blepharophimosis_ > (mailto: blepharophimosisgroups (DOT) com ) > > 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...
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