GMA, Dateline, etc - Re: Clubfoot/Ponseti method press kit

[Guest guest]

From November 2000. This e-mail was sent to a number of national

media groups. This was probably not the best way to try to

encourage them to do something, but we tried and didn't know how

else to get information to them. A number of other parents have

also tried to contact them. We got e-mails back from one or two of

the groups.

Good Morning America (also sent to Dateline, 60 Minutes and other

news story type groups): (Other parents have sent articles to them

as well over the years. Many of the links in this story from

November 2000 no longer work.)

I am hoping that you might be interested in doing a story on what

some might consider a medical miracle. It however appears to be a

medical miracle that has been ignored for at least 40 years. It has

to do with the treatment of children born with clubfoot. This birth

defect occurs in approximately 1 in 750 births and affects about

5,000 newborns in the US per year (probably about 140,000 newborns

per year worldwide).

Since the 1950's, the standard treatment for children

born with clubfoot was to try to manipulate and cast their feet for

a few months to see if the feet would straighten out. With

traditional methods this is not usually successful and between 65-

95% of children would end up needing to have major ankle surgery

before they are one year of age. Clubfoot surgery has been

described as one of the most technically complicated of all

orthopedic surgeries. And although it has been the prevailing

method of treatment for clubfoot since the 1950's there are no long

term outcome studies that go beyond 16 years of age. Some feel that

the long term outcomes of surgical treatment include painful

osteoarthritis as well as other potential risks and complications.

Since about 1950, Dr. Ignacio Ponseti at the University of Iowa has

developed a " non-surgical " method where 95% of children could be

treated by a manipulation and casting method that took only 1 to 2.5

months without requiring the surgery. This method is called the

Ponseti " Non-Surgical " method and has had the longest positive

outcome studies (about 40 years) of any method and yet only about 2-

3% of pediatric orthopedists have used it.

I am one of a group of about 70 parents who have found out about the

Ponseti " Non-Surgical " method of treatment on the internet since May

of 1999. About 40 of us had been told by our prior pediatric

orthopedic doctors that our child would have to have clubfoot

surgery. To date, only one of the 40 children has actually really

had to have the surgery. Each one of us have felt that our child has

been saved from a needless surgical procedure that has many

potential risks and complications. We also feel that we have an

obligation to try to find ways to advise other new parents of the

relatively simple Ponseti " Non-Surgical " method. These parents come

from about 25 states in the US and 5 foreign countries.

With this information now on the internet, parents have been able to

learn about this alternative and travel to where it is available.

After successfully having their children treated " non-surgically " by

the Ponseti method, many parents have taken their children back to

their original pediatric orthopedist to encourage them to learn

about a successful " Non-Surgical " alternative.

We hope that you find this story of an 86 year old Dr. Ignacio

Ponseti finally seeing his dream of having more children treated

without the risks of a major surgery worth your time. The following

web sites will give you information about the method and the parents

group who is trying to help other parents be aware that a

proven " Non-Surgical " alternative exists.

Dr. Ponseti's web site at the U of Iowa -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

Parents Testimonials concerning the method -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/PatientList.html

Parents Support Web Site with links to Information -

http://www.egroups.com/community/nosurgery4clubfoot

I think that this story has several different interesting sides to

it.

1. Dr. Ponseti has come out of retirement at age 86 to try one last

time to get his " non-surgical " treatment method accepted.

2. He has utilized the internet to take his message directly to

parents of children born with clubfoot.

3. Parents who have responded to his message and tried his method are

actively trying to tell other parents and spread the word. Parents

have taken the results back to their original doctors.

4. Now the medical community, which has largely ignored the message

for 40 plus years is beginning to listen and change.

5. About 50% of the parents on the internet are willing to change

doctors to try this method before considering surgery.

Thank you for considering this wonderful story.

and Allyson Egbert and (3-17-99)

martinegbert@...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

[Guest guest]

,

After all of this, did anyone of them ever do a story on it? I have never

seen one. Did I miss it?

Mommy to 12/17/98

and Christian 1/30/04

_____

From: Egbert

Sent: Saturday, September 18, 2004 2:07 AM

To: nosurgery4clubfoot

Subject: GMA, Dateline, etc - Re: Clubfoot/Ponseti

method press kit

From November 2000. This e-mail was sent to a number of national

media groups. This was probably not the best way to try to

encourage them to do something, but we tried and didn't know how

else to get information to them. A number of other parents have

also tried to contact them. We got e-mails back from one or two of

the groups.

Good Morning America (also sent to Dateline, 60 Minutes and other

news story type groups): (Other parents have sent articles to them

as well over the years. Many of the links in this story from

November 2000 no longer work.)

I am hoping that you might be interested in doing a story on what

some might consider a medical miracle. It however appears to be a

medical miracle that has been ignored for at least 40 years. It has

to do with the treatment of children born with clubfoot. This birth

defect occurs in approximately 1 in 750 births and affects about

5,000 newborns in the US per year (probably about 140,000 newborns

per year worldwide).

Since the 1950's, the standard treatment for children

born with clubfoot was to try to manipulate and cast their feet for

a few months to see if the feet would straighten out. With

traditional methods this is not usually successful and between 65-

95% of children would end up needing to have major ankle surgery

before they are one year of age. Clubfoot surgery has been

described as one of the most technically complicated of all

orthopedic surgeries. And although it has been the prevailing

method of treatment for clubfoot since the 1950's there are no long

term outcome studies that go beyond 16 years of age. Some feel that

the long term outcomes of surgical treatment include painful

osteoarthritis as well as other potential risks and complications.

Since about 1950, Dr. Ignacio Ponseti at the University of Iowa has

developed a " non-surgical " method where 95% of children could be

treated by a manipulation and casting method that took only 1 to 2.5

months without requiring the surgery. This method is called the

Ponseti " Non-Surgical " method and has had the longest positive

outcome studies (about 40 years) of any method and yet only about 2-

3% of pediatric orthopedists have used it.

I am one of a group of about 70 parents who have found out about the

Ponseti " Non-Surgical " method of treatment on the internet since May

of 1999. About 40 of us had been told by our prior pediatric

orthopedic doctors that our child would have to have clubfoot

surgery. To date, only one of the 40 children has actually really

had to have the surgery. Each one of us have felt that our child has

been saved from a needless surgical procedure that has many

potential risks and complications. We also feel that we have an

obligation to try to find ways to advise other new parents of the

relatively simple Ponseti " Non-Surgical " method. These parents come

from about 25 states in the US and 5 foreign countries.

With this information now on the internet, parents have been able to

learn about this alternative and travel to where it is available.

After successfully having their children treated " non-surgically " by

the Ponseti method, many parents have taken their children back to

their original pediatric orthopedist to encourage them to learn

about a successful " Non-Surgical " alternative.

We hope that you find this story of an 86 year old Dr. Ignacio

Ponseti finally seeing his dream of having more children treated

without the risks of a major surgery worth your time. The following

web sites will give you information about the method and the parents

group who is trying to help other parents be aware that a

proven " Non-Surgical " alternative exists.

Dr. Ponseti's web site at the U of Iowa -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

Parents Testimonials concerning the method -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/PatientList.html

Parents Support Web Site with links to Information -

http://www.egroups.com/community/nosurgery4clubfoot

I think that this story has several different interesting sides to

it.

1. Dr. Ponseti has come out of retirement at age 86 to try one last

time to get his " non-surgical " treatment method accepted.

2. He has utilized the internet to take his message directly to

parents of children born with clubfoot.

3. Parents who have responded to his message and tried his method are

actively trying to tell other parents and spread the word. Parents

have taken the results back to their original doctors.

4. Now the medical community, which has largely ignored the message

for 40 plus years is beginning to listen and change.

5. About 50% of the parents on the internet are willing to change

doctors to try this method before considering surgery.

Thank you for considering this wonderful story.

and Allyson Egbert and (3-17-99)

martinegbert@...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

[Guest guest]

Oh and thanks for all of this info you provided (Naomi and group). I am

going to print it and bring it with me to meet that woman with channel 10!

I don't know if it will fly with them but its work a try.

Mommy to 12/17/98

and Christian 1/30/04

_____

From: Egbert

Sent: Saturday, September 18, 2004 2:07 AM

To: nosurgery4clubfoot

Subject: GMA, Dateline, etc - Re: Clubfoot/Ponseti

method press kit

From November 2000. This e-mail was sent to a number of national

media groups. This was probably not the best way to try to

encourage them to do something, but we tried and didn't know how

else to get information to them. A number of other parents have

also tried to contact them. We got e-mails back from one or two of

the groups.

Good Morning America (also sent to Dateline, 60 Minutes and other

news story type groups): (Other parents have sent articles to them

as well over the years. Many of the links in this story from

November 2000 no longer work.)

I am hoping that you might be interested in doing a story on what

some might consider a medical miracle. It however appears to be a

medical miracle that has been ignored for at least 40 years. It has

to do with the treatment of children born with clubfoot. This birth

defect occurs in approximately 1 in 750 births and affects about

5,000 newborns in the US per year (probably about 140,000 newborns

per year worldwide).

Since the 1950's, the standard treatment for children

born with clubfoot was to try to manipulate and cast their feet for

a few months to see if the feet would straighten out. With

traditional methods this is not usually successful and between 65-

95% of children would end up needing to have major ankle surgery

before they are one year of age. Clubfoot surgery has been

described as one of the most technically complicated of all

orthopedic surgeries. And although it has been the prevailing

method of treatment for clubfoot since the 1950's there are no long

term outcome studies that go beyond 16 years of age. Some feel that

the long term outcomes of surgical treatment include painful

osteoarthritis as well as other potential risks and complications.

Since about 1950, Dr. Ignacio Ponseti at the University of Iowa has

developed a " non-surgical " method where 95% of children could be

treated by a manipulation and casting method that took only 1 to 2.5

months without requiring the surgery. This method is called the

Ponseti " Non-Surgical " method and has had the longest positive

outcome studies (about 40 years) of any method and yet only about 2-

3% of pediatric orthopedists have used it.

I am one of a group of about 70 parents who have found out about the

Ponseti " Non-Surgical " method of treatment on the internet since May

of 1999. About 40 of us had been told by our prior pediatric

orthopedic doctors that our child would have to have clubfoot

surgery. To date, only one of the 40 children has actually really

had to have the surgery. Each one of us have felt that our child has

been saved from a needless surgical procedure that has many

potential risks and complications. We also feel that we have an

obligation to try to find ways to advise other new parents of the

relatively simple Ponseti " Non-Surgical " method. These parents come

from about 25 states in the US and 5 foreign countries.

With this information now on the internet, parents have been able to

learn about this alternative and travel to where it is available.

After successfully having their children treated " non-surgically " by

the Ponseti method, many parents have taken their children back to

their original pediatric orthopedist to encourage them to learn

about a successful " Non-Surgical " alternative.

We hope that you find this story of an 86 year old Dr. Ignacio

Ponseti finally seeing his dream of having more children treated

without the risks of a major surgery worth your time. The following

web sites will give you information about the method and the parents

group who is trying to help other parents be aware that a

proven " Non-Surgical " alternative exists.

Dr. Ponseti's web site at the U of Iowa -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

Parents Testimonials concerning the method -

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/PatientList.html

Parents Support Web Site with links to Information -

http://www.egroups.com/community/nosurgery4clubfoot

I think that this story has several different interesting sides to

it.

1. Dr. Ponseti has come out of retirement at age 86 to try one last

time to get his " non-surgical " treatment method accepted.

2. He has utilized the internet to take his message directly to

parents of children born with clubfoot.

3. Parents who have responded to his message and tried his method are

actively trying to tell other parents and spread the word. Parents

have taken the results back to their original doctors.

4. Now the medical community, which has largely ignored the message

for 40 plus years is beginning to listen and change.

5. About 50% of the parents on the internet are willing to change

doctors to try this method before considering surgery.

Thank you for considering this wonderful story.

and Allyson Egbert and (3-17-99)

martinegbert@...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html