Re: PR /Maybe the Time Has Come to Begin A Foundation....

[Guest guest]

Hi Pamela, :-)

I agree about the need for print media. I would like to see a

brochure designed, printed, and distributed to every OB/GYN,

pediatrician, orthropedist, physical therapist, chiropractor, message

therapist and other health practitioner willing to make them

available to the public.

I believe that such a brochure should include general info ont he

condition, as well as information on non-surgical treatments

(Ponseti, French physiotherapy methods and others), surgical

treatments, and parental support on and off line.

One thing that I have noticed is that offline support groups are

impossible to find, even in my area (Long Island, NY) which is so

populated. Is anyone aware of any kind of national organization for

clubfoot, something to include information and parental support? If

not, perhaps the time has come to start one.

Would love some feedback on the idea...

Blessings,

Pam (The other one (LOL) - 's mom)

> I suppose you must've already thought of this (I'm so new here),

but what

> about print publicity? It's got a much longer shelf life than TV

and is

> much, much easier to do. The TV " news magazines " can only use one

out of

> every several thousand story proposals they get; you only get a

couple of

> minutes; and you're always in danger of getting bumped by a major

story.

> There could be a Ponseti story in every family, women's, children's

and

> health magazine, and also in the weekend magazines of the major

national

> newspapers (altho' that's a more difficult placement). Also, most

major

> hospitals have regular publications, so wherever there is a doctor

using the

> Ponseti method the story should be pitched to that facility's

publication so

> the local pediatricians and OB's will know to refer the parents to

that doc.

> Some PR agencies take on pro bono clients that have good stories.

It seems

> the Ponseti method would be an excellent candidate -- it's

major " character "

> is very interesting and the story is about helping children; they

don't come

> much better than that. To top it off, with all the photos, family

> histories, and website stuff already done, you've pretty much got

the story

> ready to go. It would be very easy for an agency to put together an

> attractive and user-friendly information packet for print and

electronic

> media. Perhaps a local PR firm would be willing to take on the

project, or

> maybe make it a class project for some PR/journalism students from

an Iowa

> university.

> Just some thoughts......

> Pamela (Dinos, 5 June 2000)

[Guest guest]

I haven't been around much lately but I really do beleive that a print

brochure distributed to pediatricians, ob's, family practioners etc..

would be a waste of time and money. Money and resources that could be

spent on getting children treatment, shoes for disadvantaged countries,

grants for continued studies etc.. I just see a lot of wasted trees and

too much trash. I worked as a secretary in a hospital, when print

materials aren't used on a regular basis, they get put away and

eventually thrown out. Can you imagine if maternity wards kept a

brochure on every possible birth defect? I'm just trying to put this

into perspective. These on-lne support groups create the illusion that

this is something that is common, when it is not. I think that's why we

have found each other because if you're like me living in the middle of

the woods there isn't going to be a " live " support group to attend. And

I am thankful to all on this list who provide each other with answers,

opinions, and comfort.

I think a brochure would be helpful at major orthopedic centers for

parents who need treatment and perhaps the March of Dimes would

distribute requested material or a similar organization. I could also

see the use for print material if a nonprofit organization for clubfoot

were to be created. But mass mailings? I simply think of all the junk

mail I recycle unopened or catalogs that I don't even flip through.

Just my .02,

Donna

>

>

[Guest guest]

Pam,

It is frustrating. I think going back to the physicians that told us

the nonsurgical methods wouldn't work does tremendous good. In many

ways I think more effort needs to made on the physician side than the

patient/parent side. Let me explain. I think many of us on this list

have gone to great lengths to get the best treatment for our children,

which for most of us meant getting more than one physician's opinion,

researching, asking questions, etc... For many reasons, there are too

many parents who just won't do that. They're told where to go, what to

do and they do it, " Dr. knows best " , right? (This is not a criticism or

judgement on these parents.) Now with clubfoot chances are you're going

to be intially sent to a physician who really doesn't know best. And

how many times have we seen families struggle because they truly desire

to try a nonsurgical method but can't get to a qualified physician? Or

how long will it be before the few physcians who practice these methods

are too overloaded to accept new patients? We need more physicians to

wake up!

Right now, I beleive we are at the beginning of a shift. I think just

enough parents are finding the nonsurgical methods and leaving other

physicians so that more and more physicians will be forced to examine

these treatment options. But this takes time, I don't think it will do

any good to have " too many " patients looking for the altenatives because

the demand will be greater than the supply. This could actually be more

dangerous because more physicians may be tempted to try only parts of

the methods and then experience poor results which gives the illusion

that " well we knew these methods didn't really work anyway " .

I think working with the March of Dimes is a great idea. I've mostly

been lurking these days because we weren't able to get an appointment

with a pediatric neurologist until Sept. 19th. I'm really not too

worried, but on the off chance that there is something more going on

with Christian I've promised myself not to make any commitments or major

plans until we take this next step. I hope you all understand.

I will keep you posted.

Back to lurking,

Donna

Pam wrote:

>

> Hi Donna,

>

> I hear what you're saying and you have a strong point. Ralph's and my

> concern is that those folks who are not on the net need to be able to

> easily find offline sources - not just of printed material, but

> contacts for support and encouragement. Also, I've read the March of

> Dimes material online and info on non-surgical treatment with them is

> little to non-existent. I concur about the waste, and perhaps the

> approach needs to be tempered, but we can't help but believe that the

> need is there...Only question is, what to do about it...

>

> Blessings,

> Pam

>

>

> > I haven't been around much lately but I really do beleive that a

> print

> > brochure distributed to pediatricians, ob's, family practioners

> etc..

> > would be a waste of time and money. Money and resources that could

> be

> > spent on getting children treatment, shoes for disadvantaged

> countries,

> > grants for continued studies etc.. I just see a lot of wasted trees

> and

> > too much trash. I worked as a secretary in a hospital, when print

> > materials aren't used on a regular basis, they get put away and

> > eventually thrown out. Can you imagine if maternity wards kept a

> > brochure on every possible birth defect? I'm just trying to put

> this

> > into perspective. These on-lne support groups create the illusion

> that

> > this is something that is common, when it is not. I think that's

> why we

> > have found each other because if you're like me living in the

> middle of

> > the woods there isn't going to be a " live " support group to

> attend. And

> > I am thankful to all on this list who provide each other with

> answers,

> > opinions, and comfort.

> >

> > I think a brochure would be helpful at major orthopedic centers for

> > parents who need treatment and perhaps the March of Dimes would

> > distribute requested material or a similar organization. I could

> also

> > see the use for print material if a nonprofit organization for

> clubfoot

> > were to be created. But mass mailings? I simply think of all the

> junk

> > mail I recycle unopened or catalogs that I don't even flip

> through.

> >

> > Just my .02,

> > Donna

> >

> >

> > >

> > >

[Guest guest]

Hi Donna,

I hear you! It's a " rock and a hard place " situation, isn't it? I was

one of those parents sent to a doctor who didn't have the know-how,

but at least, in the beginning, had an open mind. I guess that's

better than most, but he still missed misaligned bones due to poor

xrays we think.

I agree with Lori on the March of Dimes idea and Ralph and I are in

(Lori, hope you're reading this - I tried to write you yesterday, but

AOL bumped me.) These doctors desperately need the education regarding

non-surgical techniques. Dr. Ponseti and co. have been so gracious in

getting the word out, training others etc. My one concern with the

French Physiotherapy method, which is what we have used, it that I

hear so little about it regarding getting the word out and training

others.

Ralph and I do believe, however, that there is also a need to have a

support system specifically for the families as well, a network, if

you will, that is offline as well as online. Working with March of

Dimes can take care of the brochures/flyers, but we should also

consider beginning a network of parent volunteers that would be

willing to act both online (as we are) and offline as contacts for

people going through this journey with their children. The other

plans, raising funds for Ponseti or other treatment, used DBB

distribution, can also be a part of it, but first a network of

volunteers. A contact for such a group could also be put on a March

of Dimes brochure, along with non-surgical treatment info and contact

info.

Ralph and I have been involved in being contacts of this nature for

the homeschooling community for over 15 years and would be happy to

help get the ball rolling on such a network. Any volunteers?

Blessings,

Pam

P.S. Please let us know how your little guy is doing...

> > > I haven't been around much lately but I really do beleive that a

> > print

> > > brochure distributed to pediatricians, ob's, family practioners

> > etc..

> > > would be a waste of time and money. Money and resources that

could

> > be

> > > spent on getting children treatment, shoes for disadvantaged

> > countries,

> > > grants for continued studies etc.. I just see a lot of wasted

trees

> > and

> > > too much trash. I worked as a secretary in a hospital, when

print

> > > materials aren't used on a regular basis, they get put away and

> > > eventually thrown out. Can you imagine if maternity wards kept

a

> > > brochure on every possible birth defect? I'm just trying to put

> > this

> > > into perspective. These on-lne support groups create the

illusion

> > that

> > > this is something that is common, when it is not. I think

that's

> > why we

> > > have found each other because if you're like me living in the

> > middle of

> > > the woods there isn't going to be a " live " support group to

> > attend. And

> > > I am thankful to all on this list who provide each other with

> > answers,

> > > opinions, and comfort.

> > >

> > > I think a brochure would be helpful at major orthopedic centers

for

> > > parents who need treatment and perhaps the March of Dimes would

> > > distribute requested material or a similar organization. I

could

> > also

> > > see the use for print material if a nonprofit organization for

> > clubfoot

> > > were to be created. But mass mailings? I simply think of all

the

> > junk

> > > mail I recycle unopened or catalogs that I don't even flip

> > through.

> > >

> > > Just my .02,

> > > Donna

> > >

> > >

> > > >

> > > >

[Guest guest]

Perhaps the Local March of Dimes chapters may be a good resource to

figuring out off-line things that can be done. Perhaps there is

a few things that we can do in trying to offer our help to each

local chapter of the March of Dimes. From looking at their web site

it appears that there is usually one to two chapters in each state.

http://www.modimes.org/CODE/chapters/modquery.htm

I would guess that they have a lot of experience on how to get

information out to those who would be in need of it on a lot of

subjects relating to babies. Perhaps a few of us should contact our

local chapters and learn a bit more about what kind of resources

already exist. They would already have funding sources in place that

might help if that is needed. Then we might also be able to tap into

some bigger funding capabilities to provide funds when people have to

go out of their insurance or are not covered, etc.

We could also make the local March of Dimes chapter aware of our

parents support groups and offer to be available for new parents who

may call the March of Dimes asking for information. The March of

Dimes could then have a local parent from our group that new parents

can call by telephone.

If we could put together a database here on the nosurgery site, then

those who would be willing to be the contact to the local chapter of

the March of Dimes could put their names on that list and we could

keep track of what local chapters do and don't have a Clubfoot

and/or Ponseti method contact person. I don't know how to do it here

in the database files, but I assume that Theresa might. We could

also just have a central person to coordinate it and then just update

the list to a files here. For example:

March of Dimes Chapter Our Group Contacts E-mail or Phone number

Calif, Northern

Calif, Southern

Nevada

Oregon

Washington

Idaho

Utah

etc.

I will try to contact our local Nevada March of Dimes office and see

if they would let us be a resource to parents who call them. If

anyone else is interested in calling their local March of Dimes lets

see what kind of responses we can get. I would think that it should

be of help to be associated with an already recognized and highly

thought of group that already has contacts and resources available.

and Joshau (3-17-99)

> > > > I haven't been around much lately but I really do beleive

that a

> > > print

> > > > brochure distributed to pediatricians, ob's, family

practioners

> > > etc..

> > > > would be a waste of time and money. Money and resources that

> could

> > > be

> > > > spent on getting children treatment, shoes for disadvantaged

> > > countries,

> > > > grants for continued studies etc.. I just see a lot of wasted

> trees

> > > and

> > > > too much trash. I worked as a secretary in a hospital, when

> print

> > > > materials aren't used on a regular basis, they get put away

and

> > > > eventually thrown out. Can you imagine if maternity wards

kept

> a

> > > > brochure on every possible birth defect? I'm just trying to

put

> > > this

> > > > into perspective. These on-lne support groups create the

> illusion

> > > that

> > > > this is something that is common, when it is not. I think

> that's

> > > why we

> > > > have found each other because if you're like me living in the

> > > middle of

> > > > the woods there isn't going to be a " live " support group to

> > > attend. And

> > > > I am thankful to all on this list who provide each other with

> > > answers,

> > > > opinions, and comfort.

> > > >

> > > > I think a brochure would be helpful at major orthopedic

centers

> for

> > > > parents who need treatment and perhaps the March of Dimes

would

> > > > distribute requested material or a similar organization. I

> could

> > > also

> > > > see the use for print material if a nonprofit organization

for

> > > clubfoot

> > > > were to be created. But mass mailings? I simply think of

all

> the

> > > junk

> > > > mail I recycle unopened or catalogs that I don't even flip

> > > through.

> > > >

> > > > Just my .02,

> > > > Donna

> > > >

> > > >

> > > > >

> > > > >

[Guest guest]

Egbert wrote:

> We could also make the local March of Dimes chapter aware of our

> parents support groups and offer to be available for new parents who

> may call the March of Dimes asking for information. The March of

> Dimes could then have a local parent from our group that new parents

> can call by telephone.

>

This would be a great idea! I would be more than willing to be a

contact for this area and other midwestern areas (outside of illinois)

if needed.

>

> If we could put together a database here on the nosurgery site, then

> those who would be willing to be the contact to the local chapter of

> the March of Dimes could put their names on that list and we could

> keep track of what local chapters do and don't have a Clubfoot

> and/or Ponseti method contact person. I don't know how to do it here

> in the database files, but I assume that Theresa might. We could

> also just have a central person to coordinate it and then just update

> the list to a files here. For example:

> March of Dimes Chapter Our Group Contacts E-mail or Phone number

> Calif, Northern

> Calif, Southern

> Nevada

> Oregon

> Washington

> Idaho

> Utah

> etc.

It would be no problem to set up a database at egroups. I have set up a

couple (many months ago) that haven't been used for some time. Let me

know what kind of info we want to include in the database and I would be

happy to set it up.

[Guest guest]

Count us in. ! Ralph and I would be more than happy to act as

contact people for the NY Metro area and beyond...

> > > > > I haven't been around much lately but I really do beleive

> that a

> > > > print

> > > > > brochure distributed to pediatricians, ob's, family

> practioners

> > > > etc..

> > > > > would be a waste of time and money. Money and resources

that

> > could

> > > > be

> > > > > spent on getting children treatment, shoes for disadvantaged

> > > > countries,

> > > > > grants for continued studies etc.. I just see a lot of

wasted

> > trees

> > > > and

> > > > > too much trash. I worked as a secretary in a hospital,

when

> > print

> > > > > materials aren't used on a regular basis, they get put away

> and

> > > > > eventually thrown out. Can you imagine if maternity wards

> kept

> > a

> > > > > brochure on every possible birth defect? I'm just trying

to

> put

> > > > this

> > > > > into perspective. These on-lne support groups create the

> > illusion

> > > > that

> > > > > this is something that is common, when it is not. I think

> > that's

> > > > why we

> > > > > have found each other because if you're like me living in

the

> > > > middle of

> > > > > the woods there isn't going to be a " live " support group to

> > > > attend. And

> > > > > I am thankful to all on this list who provide each other

with

> > > > answers,

> > > > > opinions, and comfort.

> > > > >

> > > > > I think a brochure would be helpful at major orthopedic

> centers

> > for

> > > > > parents who need treatment and perhaps the March of Dimes

> would

> > > > > distribute requested material or a similar organization. I

> > could

> > > > also

> > > > > see the use for print material if a nonprofit organization

> for

> > > > clubfoot

> > > > > were to be created. But mass mailings? I simply think of

> all

> > the

> > > > junk

> > > > > mail I recycle unopened or catalogs that I don't even flip

> > > > through.

> > > > >

> > > > > Just my .02,

> > > > > Donna

> > > > >

> > > > >

> > > > > >

> > > > > >

[Guest guest]

I e-mailed some information on the Ponseti method to our local and

the national March of Dimes e-mail addresses. I then contacted our

local March of Dimes office by phone early this week. They indicated

that they do not put information on specific treatment methods in

their internet and e-mail brochures. The lady I talked to did say

that they do have additional information available through their

national resource information number at 1-. She

indicated that my e-mail to them locally and nationally would be in

their additional information materials. I have not been able to talk

to them at the national phone number yet.

The local March of Dimes office indicated that they get maybe 3-4

phone calls per year (out of probably 40 new children with clubfoot

in our area per year). From my initial phone calls to them, I didn't

get the impression that they may be of much help in specifically

advocating non-surgical treatment (although she did indicate that if

anyone calls asking about non-surgical treatment that they may be

willing to give them some information).

and (3-17-99)

> > > > > I haven't been around much lately but I really do beleive

> that a

> > > > print

> > > > > brochure distributed to pediatricians, ob's, family

> practioners

> > > > etc..

> > > > > would be a waste of time and money. Money and resources

that

> > could

> > > > be

> > > > > spent on getting children treatment, shoes for disadvantaged

> > > > countries,

> > > > > grants for continued studies etc.. I just see a lot of

wasted

> > trees

> > > > and

> > > > > too much trash. I worked as a secretary in a hospital,

when

> > print

> > > > > materials aren't used on a regular basis, they get put away

> and

> > > > > eventually thrown out. Can you imagine if maternity wards

> kept

> > a

> > > > > brochure on every possible birth defect? I'm just trying

to

> put

> > > > this

> > > > > into perspective. These on-lne support groups create the

> > illusion

> > > > that

> > > > > this is something that is common, when it is not. I think

> > that's

> > > > why we

> > > > > have found each other because if you're like me living in

the

> > > > middle of

> > > > > the woods there isn't going to be a " live " support group to

> > > > attend. And

> > > > > I am thankful to all on this list who provide each other

with

> > > > answers,

> > > > > opinions, and comfort.

> > > > >

> > > > > I think a brochure would be helpful at major orthopedic

> centers

> > for

> > > > > parents who need treatment and perhaps the March of Dimes

> would

> > > > > distribute requested material or a similar organization. I

> > could

> > > > also

> > > > > see the use for print material if a nonprofit organization

> for

> > > > clubfoot

> > > > > were to be created. But mass mailings? I simply think of

> all

> > the

> > > > junk

> > > > > mail I recycle unopened or catalogs that I don't even flip

> > > > through.

> > > > >

> > > > > Just my .02,

> > > > > Donna

> > > > >

> > > > >

> > > > > >

> > > > > >