Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Hi Lisha, I live in New York, are you interested in hearing my story about my son? Let me know. Thanks, Vicki Lowery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Be careful what companies/individuals you accept funds from and take care regarding how they influence the content of your project. Hope you can pull off an accurate piece! S From: Lisha Rigney [mailto: lgrigney@...]To: @...: Sat, 10 Aug 2002 12:46:53 -0700Subject: [ ] DocumentaryHello to all,My name is Lisha and I am a documentary filmmaker. I am interested in doinga documentary on childhood autism and childhood vaccinations. I am lookingfor families that feel their child's autism was brought on by childhoodvaccinations. I realize this is a painful topic and hope I am not intrudingby posting to this website.I am in the fundraising stages so initially I will only be interviewingfamilies within a 3 hour radius of Los Angeles. These interviews will becut into a 10 minute presentation to show the vision of the project topotential sponsors.Even though my initial interviews will be in Los Angeles and surroundingareas I would still like to hear from all those interested in telling theirstory.All interested parties please respond to this email.Thank you for your time.Lisha Rigney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Deb, I have 4 people in my house with BPES ...we would love to participate.debbie <westonfrom@...> wrote: Hello!I am a long time member of this group and enjoy reading and occasionally contributing to the email postings. My daughter, Hannah, was born with BPES in 2000. Just recentely two college friends approached my husband and I about doing a documentary about the social implications of having BPES. What I mean is how people question you or your child. Hannah has been asked numerous times "What's wrong with your eyes?" or "Why are your eyes are so small?" And I was also accused of poor prenatal care. The biggest goal of their project is to educate people and to make the documentary available for free distribution. Melody and Gwenith are eager to network with others from around the world who are interested in this project. They would love to speak with people with a family history of BPES and those without. I know that there may be some people who will be upset by this and it is in no way suggesting that there is anything wrong with having BPES. These two young students are merely interested in raising awareness about BPES and making a positive impact.If you are interested please post an email.Thanks so much!Debbie<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> Brings words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 debbie, aedan is 3,5 and the first in our family to have bpes. i would like to contribute to a doc. to raise awareness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2006 Report Share Posted February 5, 2006 Hi Debbie My daughter Evie has BPES, the first in our family, she's nearly ten and we live in Derbyshire. I would be interested in talking to the documentary people - the more awareness we can raise, the better, I say! All the best Shena blepharophimosis documentary Hello!I am a long time member of this group and enjoy reading and occasionally contributing to the email postings. My daughter, Hannah, was born with BPES in 2000. Just recentely two college friends approached my husband and I about doing a documentary about the social implications of having BPES. What I mean is how people question you or your child. Hannah has been asked numerous times "What's wrong with your eyes?" or "Why are your eyes are so small?" And I was also accused of poor prenatal care. The biggest goal of their project is to educate people and to make the documentary available for free distribution. Melody and Gwenith are eager to network with others from around the world who are interested in this project. They would love to speak with people with a family history of BPES and those without. I know that there may be some people who will be upset by this and it is in no way suggesting that there is anything wrong with having BPES. These two young students are merely interested in raising awareness about BPES and making a positive impact.If you are interested please post an email.Thanks so much!Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 We would be interested in participating. Thanks, --- In blepharophimosis , " debbie " <westonfrom@...> wrote: > > Hello! > > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times " What's wrong with your eyes? " or " Why are your > eyes are so small? " And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact. > If you are interested please post an email. > > Thanks so much! > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 I would be interested in participating. Please contact me with more information. Beth Gordon --- In blepharophimosis , " debbie " <westonfrom@...> wrote: > > Hello! > > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times " What's wrong with your eyes? " or " Why are your > eyes are so small? " And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact. > If you are interested please post an email. > > Thanks so much! > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi I would be vey happy to participate, especially to give my experiences of our first daughter, now aged 11 months, to be the first in the family with BPES. I would love more people to be aware. We live in UK near Portsmouth. Thanks Lucydebbie <westonfrom@...> wrote: Hello!I am a long time member of this group and enjoy reading and occasionally contributing to the email postings. My daughter, Hannah, was born with BPES in 2000. Just recentely two college friends approached my husband and I about doing a documentary about the social implications of having BPES. What I mean is how people question you or your child. Hannah has been asked numerous times "What's wrong with your eyes?" or "Why are your eyes are so small?" And I was also accused of poor prenatal care. The biggest goal of their project is to educate people and to make the documentary available for free distribution. Melody and Gwenith are eager to network with others from around the world who are interested in this project. They would love to speak with people with a family history of BPES and those without. I know that there may be some people who will be upset by this and it is in no way suggesting that there is anything wrong with having BPES. These two young students are merely interested in raising awareness about BPES and making a positive impact.If you are interested please post an email.Thanks so much!Debbie Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Hi there, We live in Christchurch, New Zealand. Our son Ethan has just turned 3, January 24th 2006, He is the first in either side of the family to have BPES, so a special surprise to us:) He has had no surgeries yet. His eyesight is just fine, and will be checked in a few weeks at his 3 year old check up. We would be happy to participate in any documentary on this, definately well over due we say! No-one knows of BPES! Except Dr's and there patients with it....so the more awareness the better:) Leanne C -- Re: blepharophimosis documentary Hi Debbie My daughter Evie has BPES, the first in our family, she's nearly ten and we live in Derbyshire. I would be interested in talking to the documentary people - the more awareness we can raise, the better, I say! All the best Shena blepharophimosis documentary Hello!I am a long time member of this group and enjoy reading and occasionally contributing to the email postings. My daughter, Hannah, was born with BPES in 2000. Just recentely two college friends approached my husband and I about doing a documentary about the social implications of having BPES. What I mean is how people question you or your child. Hannah has been asked numerous times "What's wrong with your eyes?" or "Why are your eyes are so small?" And I was also accused of poor prenatal care. The biggest goal of their project is to educate people and to make the documentary available for free distribution. Melody and Gwenith are eager to network with others from around the world who are interested in this project. They would love to speak with people with a family history of BPES and those without. I know that there may be some people who will be upset by this and it is in no way suggesting that there is anything wrong with having BPES. These two young students are merely interested in raising awareness about BPES and making a positive impact.If you are interested please post an email.Thanks so much!Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 -Hi, My daughter is Ruth. She is 2 years old and the first oneither side to have BPES. Her first few weeks were pretty scary not knowing. The doctors didn't even know about what Ruth had. There really does need to be more awareness. We would be glad to be part of the documentary. Jill-- In blepharophimosis , " debbie " <westonfrom@...> wrote: > > Hello! > > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times " What's wrong with your eyes? " or " Why are your > eyes are so small? " And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact. > If you are interested please post an email. > > Thanks so much! > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 We are interested in finding out more information about the documentary. It's nice to know others are going through similar issues we are. We occasionally read e-mails, but don't usually write. Here is a little bit about our history. We live near Houston. My husband was the first in his family to have BPES. My son does not have it, but my daughter, who will be turning 3 yrs old soon, does. We knew it was a possibility we might have children with BPES, but chose to have children anyway. We are so glad we did. They have been such a blessing in our lives. We have come to the realization that no one is perfect. Everyone has some type of flaw. Some are just more obvious than others. We are continually focusing on the positives and waiting to see what is in store for us next. We have chosen to wait until our daughter is 5 until we do any surgery, since her vision is developing normally and has no other eye complications. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 H, I would be interested to know more about the documentary you mentioned? gofish0224@... wrote: We are interested in finding out more information about the documentary. It's nice to know others are going through similar issues we are. We occasionally read e-mails, but don't usually write. Here is a little bit about our history. We live near Houston. My husband was the first in his family to have BPES. My son does not have it, but my daughter, who will be turning 3 yrs old soon, does. We knew it was a possibility we might have children with BPES, but chose to have children anyway. We are so glad we did. They have been such a blessing in our lives. We have come to the realization that no one is perfect. Everyone has some type of flaw. Some are just more obvious than others. We are continually focusing on the positives and waiting to see what is in store for us next. We have chosen to wait until our daughter is 5 until we do any surgery, since her vision is developing normally and has no other eye complications. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Dear Debbie, I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)debbie <westonfrom@...> wrote: Hello!I am a long time member of this group and enjoy reading and occasionally contributing to the email postings. My daughter, Hannah, was born with BPES in 2000. Just recentely two college friends approached my husband and I about doing a documentary about the social implications of having BPES. What I mean is how people question you or your child. Hannah has been asked numerous times "What's wrong with your eyes?" or "Why are your eyes are so small?" And I was also accused of poor prenatal care. The biggest goal of their project is to educate people and to make the documentary available for free distribution. Melody and Gwenith are eager to network with others from around the world who are interested in this project. They would love to speak with people with a family history of BPES and those without. I know that there may be some people who will be upset by this and it is in no way suggesting that there is anything wrong with having BPES. These two young students are merely interested in raising awareness about BPES and making a positive impact.If you are interested please post an email.Thanks so much!Debbie Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@.... -- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote: > > Dear Debbie, > I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom) > > debbie <westonfrom@...> wrote: > Hello! > > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times " What's wrong with your eyes? " or " Why are your > eyes are so small? " And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact. > If you are interested please post an email. > > Thanks so much! > Debbie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Dear Peg, I am sorry that I have not written back sooner. My daughter and I went to visit my Mom and Grandmother in Florida and just got back. I am so glad you wrote me and are interested in finding out more about the documentary. Melody Cotterill and Gwenith Blount-Nuss are the two college students who are leading the project. Please contact them by email and they will get back to you with their ideas and plans for the documentary. We live just north of Atlanta and will be participating. Please feel free to call or email me if you have any concerns or questions. I am looking forward to talking and hopefully working with you. Thank you for posting your email and for your interest! I am really excited about this project and raising awareness about BPES. Again, I am sorry that it has taken so long to get back to you. Take care. Debbie Weston From 706.969.0061 Melody Cotterill mscott6742@... Gwenith Blount-Nuss gwenith1983@... gofish0224@... wrote: We are interested in finding out more information about the documentary. It's nice to know others are going through similar issues we are. We occasionally read e-mails, but don't usually write. Here is a little bit about our history. We live near Houston. My husband was the first in his family to have BPES. My son does not have it, but my daughter, who will be turning 3 yrs old soon, does. We knew it was a possibility we might have children with BPES, but chose to have children anyway. We are so glad we did. They have been such a blessing in our lives. We have come to the realization that no one is perfect. Everyone has some type of flaw. Some are just more obvious than others. We are continually focusing on the positives and waiting to see what is in store for us next. We have chosen to wait until our daughter is 5 until we do any surgery, since her vision is developing normally and has no other eye complications. Peg Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I kind of understand what you are saying, but I think you should realize that even if this documentary aired on CNN, it doesn't mean everyone would know what it is and understand it. I don't think you would likely be affected in your daily life, you could still say you are Asian if you prefer it that way. I look at it this way, something like cleft palate is SO COMMON. If I told people my daughter had a cleft palate, that would be it, end of story, everyone knows what that is, end of story. But with BPES, no one gets it, you can explain it over and over and people really don't understand it, truly, I am still learning and it's been in my family for 100 years! > > Hello! > > > > I am a long time member of this group and enjoy reading and > > occasionally contributing to the email postings. > > My daughter, Hannah, was born with BPES in 2000. Just recentely > two > > college friends approached my husband and I about doing a > > documentary about the social implications of having BPES. What I > > mean is how people question you or your child. Hannah has been > > asked numerous times " What's wrong with your eyes? " or " Why are > your > > eyes are so small? " And I was also accused of poor prenatal care. > > The biggest goal of their project is to educate people and to make > > the documentary available for free distribution. Melody and > Gwenith > > are eager to network with others from around the world who are > > interested in this project. They would love to speak with people > > with a family history of BPES and those without. > > I know that there may be some people who will be upset by this and > > it is in no way suggesting that there is anything wrong with having > > BPES. These two young students are merely interested in raising > > awareness about BPES and making a positive impact. > > If you are interested please post an email. > > > > Thanks so much! > > Debbie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 It is an autosomal dominant trait, that means it is a dominant gene, you would have a 50/50 chance of passing it on. I understand you aren't having children so you aren't concerned about how you would manage it. I am slightly confused by your message. My family doesn't have a social problem, yes 3 different people of 3 different generations have BPES. Right now it is an issue for my 18 month old, as it was for me when I was of the same age. My point was, if more people understood BPES, there wouldn't be a need for me to feel tired and sad sometimes about explaining it to people, or possibly there wouldnt' be a need for you to tell people you are Asian, when I am assuming you are not. > > > Hello! > > > > > > I am a long time member of this group and enjoy reading and > > > occasionally contributing to the email postings. > > > My daughter, Hannah, was born with BPES in 2000. Just recentely > > two > > > college friends approached my husband and I about doing a > > > documentary about the social implications of having BPES. What I > > > mean is how people question you or your child. Hannah has been > > > asked numerous times " What's wrong with your eyes? " or " Why are > > your > > > eyes are so small? " And I was also accused of poor prenatal > care. > > > The biggest goal of their project is to educate people and to > make > > > the documentary available for free distribution. Melody and > > Gwenith > > > are eager to network with others from around the world who are > > > interested in this project. They would love to speak with > people > > > with a family history of BPES and those without. > > > I know that there may be some people who will be upset by this > and > > > it is in no way suggesting that there is anything wrong with > having > > > BPES. These two young students are merely interested in raising > > > awareness about BPES and making a positive impact. > > > If you are interested please post an email. > > > > > > Thanks so much! > > > Debbie > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 --I don't think a documentary on BPES is going to change anything what is awareness anyway, It will only be of interest to those interested. I've been picked on and laughed at and beat up in my child hood years more times then I care to remember. I think a documentary will only invite more ridicule and questions from the same people Who stare and ask dumb questions anyway. I did enjoy being from china or japan or what ever Asian country i wanted to be from Just my thoughts DAD -> I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. > Beth Mullane <srmrmm@...> wrote: > > > > > > Debbie, > Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL...... > > cjberwick3 <cjberwick3@...> wrote: > Dear Debbie: I would really be intrested in helping with the > documentary. My Father-in-law, my husband and my son all have BPES. > Please let me know more. I have another email address > cjberwick@... > -- In blepharophimosis , Terry Helgestad > <terryahelge@> wrote: > > > > Dear Debbie, > > I would be interested in the documentary about BPES. My > daughter, (20), is the first one on all sides of our family > who has it. Please let me know more. Thank you. Very Sincerely, > Terry ('s mom) > > > > debbie <westonfrom@> wrote: > > Hello! > > > > I am a long time member of this group and enjoy reading and > > occasionally contributing to the email postings. > > My daughter, Hannah, was born with BPES in 2000. Just recentely > two > > college friends approached my husband and I about doing a > > documentary about the social implications of having BPES. What I > > mean is how people question you or your child. Hannah has been > > asked numerous times " What's wrong with your eyes? " or " Why are > your > > eyes are so small? " And I was also accused of poor prenatal care. > > The biggest goal of their project is to educate people and to make > > the documentary available for free distribution. Melody and > Gwenith > > are eager to network with others from around the world who are > > interested in this project. They would love to speak with people > > with a family history of BPES and those without. > > I know that there may be some people who will be upset by this and > > it is in no way suggesting that there is anything wrong with having > > BPES. These two young students are merely interested in raising > > awareness about BPES and making a positive impact. > > If you are interested please post an email. > > > > Thanks so much! > > Debbie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 I agree, I do not think this documentary will have much impact(if any), because it is going to have a limited audience, and we haven't seen it yet and do not know how BPES will be portrayed. But you never know. However I do think education is key. I do not think that more people knowing about BPES will increase ridicule. Here is the thing... I don't enjoy explaining to people about BPES, but I realize sometimes I have to do it. I am sorry you were ridiculed and hurt as a child. I cannot tell you the pain that I have in my heart for anyone who has endured ridicule. I know that my grandfather had a horrible childhood, which included being abandoned by his own family, because he was different. I carry that pain in my heart. But I refuse to say that " people will pick on us because we are different " it's just not necessarily true, and what good is that attitude going to be for my daughter, or for anyone else? I do not feel I have been ridiculed, but acceptance will always be hard won for me, because of my early experiences. I know for certain it was better for me than for my dad, and I am hoping that it will be better still for my daughter. What choice do any human beings have but to live out our lives as positively as we are able, and be hopeful? I am a teacher, and I know for certain that you can make an impact on people. There is so much less bullying today that in the school where I went, largely because teachers, counselors and parents are working together to stop it. I am sorry if it seems I overreacted but you struck a nerve. I am kind of surprised by your message because you had enough hope to have 4 kids! > > > Hello! > > > > > > I am a long time member of this group and enjoy reading and > > > occasionally contributing to the email postings. > > > My daughter, Hannah, was born with BPES in 2000. Just recentely > > two > > > college friends approached my husband and I about doing a > > > documentary about the social implications of having BPES. What I > > > mean is how people question you or your child. Hannah has been > > > asked numerous times " What's wrong with your eyes? " or " Why are > > your > > > eyes are so small? " And I was also accused of poor prenatal > care. > > > The biggest goal of their project is to educate people and to > make > > > the documentary available for free distribution. Melody and > > Gwenith > > > are eager to network with others from around the world who are > > > interested in this project. They would love to speak with > people > > > with a family history of BPES and those without. > > > I know that there may be some people who will be upset by this > and > > > it is in no way suggesting that there is anything wrong with > having > > > BPES. These two young students are merely interested in raising > > > awareness about BPES and making a positive impact. > > > If you are interested please post an email. > > > > > > Thanks so much! > > > Debbie > > > > > > > > > > > > > > > > > > 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.