RE: Moorfields Study in London England - they need people to participate - UPDATE

[Guest guest]

Hi Shireen

I would be more than willing to take part in this study however I do not know if I am what they are looking for as I have been able to have children.

You can let me know

Thanks

Cameron

GlasgowAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Hi

From what I understand they would like you to participate. Why not drop a line to Hardy?

I hope that we get to meet while you are in London - perhaps with the other people who have BPES and live in town.

Good luck

Shireen

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of D CameronSent: 16 June 2005 17:38blepharophimosis Subject: Re: blepharophimosis Moorfields Study in London England - they need people to participate - UPDATE

Hi Shireen

I would be more than willing to take part in this study however I do not know if I am what they are looking for as I have been able to have children.

You can let me know

Thanks

Cameron

GlasgowAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Hello all, I have also taken part in this study and confirm the specialists involved in this are particularly friendly and are quite happy to answer questions and be as helpful with us as we are being with them.

I took my daughter who has BPES with me to the fertility specialist, who is interested in me as I have had 2 children, however is doing further tests for my knowledge as well as their research. My daughter is too young to be involved or tested for various things, however she has said as soon as she is older she can go straight onto the books.

I feel this is a very worthwhile thing that we have done, as if they find out more over the next 20 years what they have found out over the last 20 years its got to be a good thing.

I dont want anyone to feel I am telling anybody what to do, Im just offering my opinion. I completely understand and respect that a variety of people are happy with their situation and wouldnt want to be involved and thats a good thing too!

Regards

Clare Teale

Hertfordshire, UK

Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Hi Shireen,

I am from NZ and was just wondering who the Dr from NZ was running this study? It wouldn't be Shelling or ? Will this Dr be doing the same study here in NZ for us folk who already live here? Please let me know....

Thanks,

Leanne (NZ)

-- blepharophimosis Moorfields Study in London England - they need people to participate - UPDATE

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Hi Leanne

The person running the study is called Hardy.

I think that he is doing the study as part of working for Moorfields Eye Hospital in London. I will ask him that question, along with the other questions that people have sent me.

Take care, Shireen

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of costellosSent: 18 June 2005 02:34blepharophimosis Subject: Re: blepharophimosis Moorfields Study in London England - they need people to participate - UPDATE

Hi Shireen,

I am from NZ and was just wondering who the Dr from NZ was running this study? It wouldn't be Shelling or ? Will this Dr be doing the same study here in NZ for us folk who already live here? Please let me know....

Thanks,

Leanne (NZ)

-- blepharophimosis Moorfields Study in London England - they need people to participate - UPDATE

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Do you know if they are looking for any children in the US to test or if they plan to

Sports Rekindle the Rivalries. Sign up for Fantasy Football

[Guest guest]

Hi All,

Hardy is actually Australian ( you know how Australians and New

Zealanders don't like to get confused with each other!)

Anyone in NZ can still get their BPES gene testing done in NZ by

contacting me or Shelling at the University of Auckland.

Regards

On 18/06/2005, at 1:34 PM, costellos wrote:

> Hi Shireen,

>  

> I am from NZ and was just wondering who the Dr from NZ was running

> this study? It wouldn't be Shelling or ? Will

> this Dr be doing the same study here in NZ for us folk who already

> live here? Please let me know....

>  

> Thanks,

>  

>  Leanne (NZ) 

>  

> -- blepharophimosis Moorfields Study in London England - they

> need people to participate - UPDATE

>  

> Hi everyone

> Some of you may have read an earlier post on this topic, but for those

> of you who are new, I will start from scratch.

>  

> Moorfields Eye Hospital in London England are conducting a study on

> BPES and infertility. Previously, they were only able to see people

> who are, or were, patients of the hospital. It turns out that they

> don't have enough people, and so they are extending the study.  (Just

> to be clear, this is only a potential problem for females.There is no

> known association between infertility and BPES in males).

>  

> What type people do they need?

> Females, aged 18+, who have BPES

>  

> Can anyone participate?

> Yes, you don't have to be from the UK. There is a small travel budget.

> For example, the equivalent of a " return train ticket " .  

>  

> Arranging the consultation. How does that happen?

> They sent me a long letter, explaining what is needed, why they are

> doing the study. I then filled out a short form and sent it back,

> saying that I was happy to participate. Then they sent me even more

> information.

>  

> What is involved?

> I had a consultation with the person running the study, a very nice

> specialist from New Zealand, who is working for the Mr Collin (whom we

> have all heard of, and who has done some wonderful work on people with

> BPES)

>  

> When I went along, I spent about 30-40 minutes being examined by him.

> I had plenty of time to ask questions.

> Then I gave a small sample of blood.

>  

> After my meeting at Moorfields, (which happened not to be on the same

> day, but I guess could have been) I visited a specialist at Guy's

> hospital. The specialist is female, and  an expert in assisted

> fertility.

>  

>  

> Why participate?

> This is a great opportunity to be seen at Moorfields Eye Hospital. I

> know there are many very good hospitals all around the world. But in

> my opinion, it would be a good chance for people to get seen by

> somebody who has met so many people with BPES, and to get some advice,

> and have some questions answered.

>  

> I really cannot stress how friendly both specialists were. When I told

> them that we have a group, they were very pleased to learn that

> our group may be able to help them to find more participants.  Also, I

> think that if as a group we establish a good relationship with these

> people, then they are likely to share their findings with us, answer

> any questions, and for people who live fare away, assist in

> recommending specialist care providers.

>  

> So - if you are thinking of participating - what do you do next?

>  

> 1. You can ask me some more questions, I will be happy to help out

> 2. You can contact the person running the study directly     

> Hardy:       hardy_thomas@...   

>  

> Just so that I get some idea of how much progress in contributing, it

> would be nice if you let me know - but I respect your privacy if you

> want to keep that to yourself.

>  

> What if I am thinking of participating, but accommodation in London is

> a problem?

> Please let me know, and I will try to help you sort something out.

>  

> Shireen Mohandes

> London, England

>  

>

>

>

[Guest guest]

Thanks Shireen we would appreciate any info you can find out for us:)

leanne

-- blepharophimosis Moorfields Study in London England - they need people to participate - UPDATE

Hi everyone

Some of you may have read an earlier post on this topic, but for those of you who are new, I will start from scratch.

Moorfields Eye Hospital in London England are conducting a study on BPES and infertility. Previously, they were only able to see people who are, or were, patients of the hospital. It turns out that they don't have enough people, and so they are extending the study. (Just to be clear, this is only a potential problem for females.There is no known association between infertility and BPES in males).

What type people do they need?

Females, aged 18+, who have BPES

Can anyone participate?

Yes, you don't have to be from the UK. There is a small travel budget. For example, the equivalent of a "return train ticket".

Arranging the consultation. How does that happen?

They sent me a long letter, explaining what is needed, why they are doing the study. I then filled out a short form and sent it back, saying that I was happy to participate. Then they sent me even more information.

What is involved?

I had a consultation with the person running the study, a very nice specialist from New Zealand, who is working for the Mr Collin (whom we have all heard of, and who has done some wonderful work on people with BPES)

When I went along, I spent about 30-40 minutes being examined by him. I had plenty of time to ask questions.

Then I gave a small sample of blood.

After my meeting at Moorfields, (which happened not to be on the same day, but I guess could have been) I visited a specialist at Guy's hospital. The specialist is female, and an expert in assisted fertility.

Why participate?

This is a great opportunity to be seen at Moorfields Eye Hospital. I know there are many very good hospitals all around the world. But in my opinion, it would be a good chance for people to get seen by somebody who has met so many people with BPES, and to get some advice, and have some questions answered.

I really cannot stress how friendly both specialists were. When I told them that we have a group, they were very pleased to learn that our group may be able to help them to find more participants. Also, I think that if as a group we establish a good relationship with these people, then they are likely to share their findings with us, answer any questions, and for people who live fare away, assist in recommending specialist care providers.

So - if you are thinking of participating - what do you do next?

1. You can ask me some more questions, I will be happy to help out

2. You can contact the person running the study directly Hardy: hardy_thomas@...

Just so that I get some idea of how much progress in contributing, it would be nice if you let me know - but I respect your privacy if you want to keep that to yourself.

What if I am thinking of participating, but accommodation in London is a problem?

Please let me know, and I will try to help you sort something out.

Shireen Mohandes

London, England

[Guest guest]

Hi everyone

I also took part in the study a couple of weeks ago. I met

Hardy who is conducting the research on behalf of the consultant, Mr

Collin. Mr Hardy is really friendly and is happy to discuss any

questions or concerns you have about BPES, surgery or the research

itself.

He went through a serious of questions and then examined my eyelids,

taking a few measurements and photographs. He also tests your

vision which is just the same as a routine eye test at an

opticians. I then went to give a blood sample.

I was also offered an appointment with the Assisted Conception unit

at Guys and St 's Hospital but I haven't taken up the offer,

mainly due to my own circumstances at the moment.

Mr Hardy is due to return to Australia in January 2006 and he's not

clear as yet whether anyone will take his place. He's therefore

urging people who would like to take part to contact him this month.

Mr Hardy's email address has changed since Shireen first posted

about the reasearch so it's now hardy_thomas@... or

thomas.hardy@....

I agree with Clare and think this is a really worthwhile thing to do

that I'm sure will prove useful to other women with BPES in the

future.

Kind regards

Anita Holcroft

Leamington Spa, UK

> Hi everyone

> Some of you may have read an earlier post on this topic, but for

those of you who are new, I will start from scratch.

>

> Moorfields Eye Hospital in London England are conducting a study

on BPES and infertility. Previously, they were only able to see

people who are, or were, patients of the hospital. It turns out that

they don't have enough people, and so they are extending the study.

(Just to be clear, this is only a potential problem for

females.There is no known association between infertility and BPES

in males).

>

> What type people do they need?

> Females, aged 18+, who have BPES

>

> Can anyone participate?

> Yes, you don't have to be from the UK. There is a small travel

budget. For example, the equivalent of a " return train ticket " .

>

> Arranging the consultation. How does that happen?

> They sent me a long letter, explaining what is needed, why they

are doing the study. I then filled out a short form and sent it

back, saying that I was happy to participate. Then they sent me even

more information.

>

> What is involved?

> I had a consultation with the person running the study, a very

nice specialist from New Zealand, who is working for the Mr Collin

(whom we have all heard of, and who has done some wonderful work on

people with BPES)

>

> When I went along, I spent about 30-40 minutes being examined by

him. I had plenty of time to ask questions.

> Then I gave a small sample of blood.

>

> After my meeting at Moorfields, (which happened not to be on the

same day, but I guess could have been) I visited a specialist at

Guy's hospital. The specialist is female, and an expert in assisted

fertility.

>

>

> Why participate?

> This is a great opportunity to be seen at Moorfields Eye Hospital.

I know there are many very good hospitals all around the world. But

in my opinion, it would be a good chance for people to get seen by

somebody who has met so many people with BPES, and to get some

advice, and have some questions answered.

>

> I really cannot stress how friendly both specialists were. When I

told them that we have a group, they were very pleased to

learn that our group may be able to help them to find more

participants. Also, I think that if as a group we establish a good

relationship with these people, then they are likely to share their

findings with us, answer any questions, and for people who live fare

away, assist in recommending specialist care providers.

>

> So - if you are thinking of participating - what do you do next?

>

> 1. You can ask me some more questions, I will be happy to help out

> 2. You can contact the person running the study directly

Hardy: hardy_thomas@b...

>

> Just so that I get some idea of how much progress in contributing,

it would be nice if you let me know - but I respect your privacy if

you want to keep that to yourself.

>

> What if I am thinking of participating, but accommodation in

London is a problem?

> Please let me know, and I will try to help you sort something out.

>

> Shireen Mohandes

> London, England

>

>

>

>

[Guest guest]

Hi Anita

I agree with you, clare and shireen about how important this

research is. I was not aware of this until your recent posting

about taking part as I only joined recently. I have emailed

Hardy, I hope it's the right email address and I hope it's not too

late, if he's returning in Jan 2006. I would encourage other adult

females with BPES who have joined recently to find out more. When I

find out anything, I'll let everyone know. take care for now,

Duncan

> > Hi everyone

> > Some of you may have read an earlier post on this topic, but for

> those of you who are new, I will start from scratch.

> >

> > Moorfields Eye Hospital in London England are conducting a study

> on BPES and infertility. Previously, they were only able to see

> people who are, or were, patients of the hospital. It turns out

that

> they don't have enough people, and so they are extending the

study.

> (Just to be clear, this is only a potential problem for

> females.There is no known association between infertility and BPES

> in males).

> >

> > What type people do they need?

> > Females, aged 18+, who have BPES

> >

> > Can anyone participate?

> > Yes, you don't have to be from the UK. There is a small travel

> budget. For example, the equivalent of a " return train ticket " .

> >

> > Arranging the consultation. How does that happen?

> > They sent me a long letter, explaining what is needed, why they

> are doing the study. I then filled out a short form and sent it

> back, saying that I was happy to participate. Then they sent me

even

> more information.

> >

> > What is involved?

> > I had a consultation with the person running the study, a very

> nice specialist from New Zealand, who is working for the Mr Collin

> (whom we have all heard of, and who has done some wonderful work

on

> people with BPES)

> >

> > When I went along, I spent about 30-40 minutes being examined by

> him. I had plenty of time to ask questions.

> > Then I gave a small sample of blood.

> >

> > After my meeting at Moorfields, (which happened not to be on the

> same day, but I guess could have been) I visited a specialist at

> Guy's hospital. The specialist is female, and an expert in

assisted

> fertility.

> >

> >

> > Why participate?

> > This is a great opportunity to be seen at Moorfields Eye

Hospital.

> I know there are many very good hospitals all around the world.

But

> in my opinion, it would be a good chance for people to get seen by

> somebody who has met so many people with BPES, and to get some

> advice, and have some questions answered.

> >

> > I really cannot stress how friendly both specialists were. When

I

> told them that we have a group, they were very pleased to

> learn that our group may be able to help them to find more

> participants. Also, I think that if as a group we establish a

good

> relationship with these people, then they are likely to share

their

> findings with us, answer any questions, and for people who live

fare

> away, assist in recommending specialist care providers.

> >

> > So - if you are thinking of participating - what do you do next?

> >

> > 1. You can ask me some more questions, I will be happy to help

out

> > 2. You can contact the person running the study directly

> Hardy: hardy_thomas@b...

> >

> > Just so that I get some idea of how much progress in

contributing,

> it would be nice if you let me know - but I respect your privacy

if

> you want to keep that to yourself.

> >

> > What if I am thinking of participating, but accommodation in

> London is a problem?

> > Please let me know, and I will try to help you sort something

out.

> >

> > Shireen Mohandes

> > London, England

> >

> >

> >

> >