Plagio Parent's Support and CAPPS name change

[Guest guest]

Jaya,

I already posted this to , but you have my 100% support.

Marci

[Guest guest]

CAPPS - I say go for it. Beck

[Guest guest]

Please understand that I spent the last year doing everything I could to support families dealing with craniosynostosis. And during that time I got to know alittle bit about Positional, and learned that if I was going to help Craniofamilies it meant I was also going to help Plagiofamilies. Through the year I had a few positional moms take an interest in expanding Plagio information through CAPS but Jaya was the first one to take the commiment and run with it. I told Jaya from day one that I was willing to change things to include both groups but that is going to take time and money, since we are a non profit organization it will take changing paperwork. And before both are spent we need to know that this is what you want. If not then we will just leave things as is. Like I said I worked hard the last year to make CAPS what it is and I am willing to open it to CAPPS but we just need to know that we are all willing to work together under one name?

Thanks

Pitchke

[Guest guest]

Just support as far as not having a problem seeing both disorders

covered under one Organization. See, basically the gist is this,

since already has CAPS set up for Cranio officially, she

wants to make sure that neither the Cranio or the Plagio families

have a problem if we make the organization officially for both

disorders. We plan to be equal as far as fighting for recognition of

BOTH disorders and mention them both in tandem.

So I guess the better way of putting it is, does anyone have a

problem with Cranio and Plagio being put together equally in one

organizaion to achieve the same goal for both disorders?

We don't want to find out later on, that people would have rathered

Plagio and Cranio stay seperate and that the general consensis is we

should have kept things the way they were.........thus the reason for

asking the board............ because this is a voice for the Plagio

community and the insight here helps us gain knowledge as to what

would serve the greater good of all Plagio families.

Sincerely,

Jaya Dong

www.caps2000.org

>

> >

> > So if you believe that CAPPS - Craniosynostosis And Positional

> > Plagiocephaly Support - is the way to go, and you plan to support

us

> > as an organization fighting for BOTH causes.........please post

and

> > say so, so that we can move forward with the official name change

and

> > everyone will be happy. )

> >

>

> I guess I'm a little confused about why this is causing such

concern. If CAPS

> wants to support both issues, please do so. If CAPS wants to

become CAPPS, go

> ahead.

>

> IMHO, the CAPS organization simply needs to identify its mission

and go from

> there. I think we will all be happy to see as many voices as

possible

> addressing the issue of craniosynostosis and positional

plagiocephaly.

>

> Maybe I'm missing something, what kind of support are you expecting

from the

> people on this list?

[Guest guest]

" Jaya Dong " wrote:

> Just support as far as not having a problem seeing both disorders

> covered under one Organization. See, basically the gist is this,

> since already has CAPS set up for Cranio officially, she

> wants to make sure that neither the Cranio or the Plagio families

> have a problem if we make the organization officially for both

> disorders. We plan to be equal as far as fighting for recognition of

> BOTH disorders and mention them both in tandem.

I think that's great. After all, a primary concern should be that positional

plagiocephaly is not misdiagnosed as craniosynostosis (and vice versa)

>

> So I guess the better way of putting it is, does anyone have a

> problem with Cranio and Plagio being put together equally in one

> organizaion to achieve the same goal for both disorders?

I'm not certain what this means. Although the two conditions can and have been

confused for each other, they are two distinct disorders. Treatment, the risks

of treatment, the prognosis and the cost differ significantly. Let's be honest,

surgery is a much greater risk than an orthosis.

>

> We don't want to find out later on, that people would have rathered

> Plagio and Cranio stay seperate and that the general consensis is we

> should have kept things the way they were.........thus the reason for

> asking the board............ because this is a voice for the Plagio

> community and the insight here helps us gain knowledge as to what

> would serve the greater good of all Plagio families.

>

You seem to be asking parents if they will use the CAPS website if you add more

information on positional plagiocephaly. All I can say is, add the information

and see. I think CAPS needs to make its decision based on its own conviction.

On the other hand, since you are registered non-profit organization for

craniosynostosis support, maybe you should be asking the craniosynosis parents

if they have objections to adding information on positional plagiocephaly. They

are your constituency. [Maybe you have.]

I guess I just don't see the reason to be concerned. The more people who are

reached, the better.

Regards,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

M. , Ph.D.

Webworks & University of Iowa College of Public Health

Learn more at http://www.KM.net

Have you established http://www.Your-Internet-Presence.com?

[Guest guest]

Marci,

Thank you!!!!

Jaya

> Jaya,

>

> I already posted this to , but you have my 100% support.

>

> Marci

[Guest guest]

From: <CAPSORG@...>

<snip>

> leave things as is. Like I said I worked hard the last year to make

> CAPS

> what it is and I am willing to open it to CAPPS but we just need to know

> that

> we are all willing to work together under one name?

,

Sorry if I'm being dense, but what do you mean by work together? How do changes

in your organization affect this list? What are you afraid is going to happen?

I just do get it. Why all the drama? How does it affect this list?

[Guest guest]

I'm with . I have always shown my support towards spreading as much info as possible to as many as possible. Jaya, you know I support your cause! I'm confused as to why this would be an issue. Why would anyone be AGAINST the cranio & plagio communities coming together to become larger and seen by more? , maybe you could explain what you are concerned about?

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: M.

Plagiocephaly

Sent: Friday, March 09, 2001 10:08 AM

Subject: Re: Plagio Parent's Support and CAPPS name change

Jaya Dong" wrote:>> So if you believe that CAPPS - Craniosynostosis And Positional> Plagiocephaly Support - is the way to go, and you plan to support us> as an organization fighting for BOTH causes.........please post and> say so, so that we can move forward with the official name change and> everyone will be happy. )>I guess I'm a little confused about why this is causing such concern. If CAPSwants to support both issues, please do so. If CAPS wants to become CAPPS, goahead.IMHO, the CAPS organization simply needs to identify its mission and go fromthere. I think we will all be happy to see as many voices as possibleaddressing the issue of craniosynostosis and positional plagiocephaly.Maybe I'm missing something, what kind of support are you expecting from thepeople on this list?

[Guest guest]

and Jaya,

I agree with Becky - I have already been contacted by someone in my state and

I think the merging of the two groups will be nothing but good!

Marci

[Guest guest]

and Jaya,

I want to express my whole-hearted support for the name change. I'm a

plagio state contact and just two days ago I got an e-mail from (and

subsequently spoke via telephone with) a mother in my area who's

concerned about her baby having plagio. If not for the info on the

website, who knows what might've happened. This mother now has

information on how to go about getting her baby evaluated - plus I was

able to provide what we all have come to know is invaluable emotional

support for the roller coaster ride she's about to embark on.

My two cents? FULL SPEED AHEAD with the name change. Anything I can do

to help, I will.

Becky & (5/4/00, banded 10/13/00, graduated 2/5/01)

Plano, TX

[Guest guest]

Sue & ,

Thank you! )

Sincerely,

Jaya Dong

> > Please understand that I spent the last year doing everything I

> could to

> > support families dealing with craniosynostosis. And during that

> time I got

> > to know alittle bit about Positional, and learned that if I was

> going to help

> > Craniofamilies it meant I was also going to help Plagiofamilies.

> Through the

> > year I had a few positional moms take an interest in expanding

> Plagio

> > information through CAPS but Jaya was the first one to take the

> commiment and

> > run with it. I told Jaya from day one that I was willing to

change

> things to

> > include both groups but that is going to take time and money,

since

> we are a

> > non profit organization it will take changing paperwork. And

> before both are

> > spent we need to know that this is what you want. If not then we

> will just

> > leave things as is. Like I said I worked hard the last year to

> make CAPS

> > what it is and I am willing to open it to CAPPS but we just need

to

> know that

> > we are all willing to work together under one name?

> > Thanks

> > Pitchke

[Guest guest]

Those are some great questions. First of all the cranio families have known about the Plagio side for a while, I mean we have been adding things to the website for months now. With every intention of changing the name.

As for offending families, most of that won't happen because the support groups are seperate. And we plan to keep it that way due to the high volume of emails that can be produced by both sides.

But I will let you in on a little something. As far as Cranio goes the affects are all different too. I mean we have babies that have surgery and are fine, we have ones dealing with small delays (like my son), we have ones with complex syndrome and multiple suture issues. And we have often gotten families who first thought it was cranio tell us that it is plagio. We are grateful at that moment, this is one less child that has to go through surgery.

But Jaya and I have felt for a very long time by just our phone converstations that the conditions are so similar that joining forces can only help not hurt.

I also look at us as divisions of a corporation and IF there are times that something will benefit the Plagio side and not the Cranio side then we will still work to meet those goals. Not everything has to be about both conditions together, we just feel that we can accomplish more with all of us coming together to work on the ultimate goal. Public Awareness, Support, and offering information. I hope that helped sorry so long.

Pitchke

[Guest guest]

-

I MEANT the merging of the plagio and cranio people on CAPPS - I certainly

did not mean this group.

Marci

[Guest guest]

Jaya and :

I totally support the combined power of these two groups. New moms and dads

need to know about both problems, and the media is giving poor coverage to

us both. With a larger more powerful organization, we can be heard and many

more families can be helped.

A question...are the cranio moms in full support? I would assume so. I

would also ask to , if there is any risk of us " only plagio " parents

hurting or offending the " cranio " parents with our concerns.

I ask this because as a mom of preemies that survived TTTS (Twin to Twin

Transfusion Syndrome), within the TTTS community I often have to be very

careful of my words as to not offend the parents who either lost children or

have handicapped children as a result of TTTS. My problems (delayed motor

skills, plagio, monthly RSV shots) pale in comparison to the daily pain and

challenges they face.

I don't want to belittle the problems we plagio parents have (because to us

they are HUGE), just want to make sure that there is a level of sensitivity

and knowledge that the cranio parents have been through so much more than we

can ever know. Am I over thinking?

Can you tell I am wordy and introspective this morning?!? That morning

meditation will do it!!!

Please let me know your thoughts!

Sue Luck

mom to , DOC band graduate

Cleveland, OH

----- Original Message -----

From: Jaya Dong <angandjaya@...>

<Plagiocephaly >

Sent: Friday, March 09, 2001 12:59 PM

Subject: Plagio Parent's Support and CAPPS name change

> Hello Everyone,

>

> As you all know I have committed myself to the betterment of Plagio

> by working with and CAPS. Some of you have expressed

> concern that since we have not officially changed the name, that you

> were hesitant to give full support to us. On the other hand,

> has been hesitant to officially change the name because she

> is not sure that she will gain the full support of the Plagio parents.

>

> So Please folks......if you intend to support CAPPS as a organization

> that in turn supports and educates about both Cranio AND Plagio,

> please post and say so.

>

> Many of you have already given CAPS, and myself personally, wonderful

> support.......I just need you to re-affirm this with so that

> she, myself and all of us are on the " same page " and we can progress

> forward knowing we are all working as a team.

>

> So if you believe that CAPPS - Craniosynostosis And Positional

> Plagiocephaly Support - is the way to go, and you plan to support us

> as an organization fighting for BOTH causes.........please post and

> say so, so that we can move forward with the official name change and

> everyone will be happy. )

>

> Sincerely,

> Jaya Dong

> www.caps2000.org

>

>

> -- In Plagiocephaly@y..., CAPSORG@a... wrote:

> > Okay everyone Jaya and I have been talking about the name change.

> I told her

> > my concern that if we change the name weither you all will support

> us 100%.

> > Then she proceeded to tell me that some of you might be feeling the

> same way

> > about supporting CAPPS in fear the Plagio side might go out on its

> own. Jaya

> > and I are here to tell you that we are committed to working

> together to raise

> > awareness about both conditions equally. I hope this clears some

> of this up

> > for all of you. Please give me your thoughts and feelings on

> this!

> > Thanks for your time,

> > Pitchke

>

>

>

[Guest guest]

I think this is going to work out find. Like you said it's for both

groups to form together. The more we have the better. Don't you think so?

Ranae Spencer's

mom

[Guest guest]

Yes I do and thank you for your support.

Pitchke

[Guest guest]

Jaya -

I fully support the merge! I believe I am the only person on the plagio

board who might be facing surgery due to cranio - but right now they are

treating it as plagio. So - I am in both boats!

Kim, raleigh, nc

-----Original Message-----

From: Jaya Dong [mailto:angandjaya@...]

Sent: Friday, March 09, 2001 12:59 PM

Plagiocephaly

Subject: Plagio Parent's Support and CAPPS name change

Hello Everyone,

As you all know I have committed myself to the betterment of Plagio

by working with and CAPS. Some of you have expressed

concern that since we have not officially changed the name, that you

were hesitant to give full support to us. On the other hand,

has been hesitant to officially change the name because she

is not sure that she will gain the full support of the Plagio parents.

So Please folks......if you intend to support CAPPS as a organization

that in turn supports and educates about both Cranio AND Plagio,

please post and say so.

Many of you have already given CAPS, and myself personally, wonderful

support.......I just need you to re-affirm this with so that

she, myself and all of us are on the " same page " and we can progress

forward knowing we are all working as a team.

So if you believe that CAPPS - Craniosynostosis And Positional

Plagiocephaly Support - is the way to go, and you plan to support us

as an organization fighting for BOTH causes.........please post and

say so, so that we can move forward with the official name change and

everyone will be happy. )

Sincerely,

Jaya Dong

www.caps2000.org

-- In Plagiocephaly@y..., CAPSORG@a... wrote:

> Okay everyone Jaya and I have been talking about the name change.

I told her

> my concern that if we change the name weither you all will support

us 100%.

> Then she proceeded to tell me that some of you might be feeling the

same way

> about supporting CAPPS in fear the Plagio side might go out on its

own. Jaya

> and I are here to tell you that we are committed to working

together to raise

> awareness about both conditions equally. I hope this clears some

of this up

> for all of you. Please give me your thoughts and feelings on

this!

> Thanks for your time,

> Pitchke

[Guest guest]

Kim,

Thank you for your support! I will be sending pray and good vibes

your way! Good luck tomorrow!

Sincerely,

Jaya Dong

http://www.caps2000.org

> > Okay everyone Jaya and I have been talking about the name change.

> I told her

> > my concern that if we change the name weither you all will support

> us 100%.

> > Then she proceeded to tell me that some of you might be feeling

the

> same way

> > about supporting CAPPS in fear the Plagio side might go out on its

> own. Jaya

> > and I are here to tell you that we are committed to working

> together to raise

> > awareness about both conditions equally. I hope this clears some

> of this up

> > for all of you. Please give me your thoughts and feelings on

> this!

> > Thanks for your time,

> > Pitchke

>

>

>