Ponseti Docs, the next generation

[Guest guest]

I feel very confident that the Ponseti method will continue to grow

exponentially, with or without huge media exposure. It will continue to do

so as it has done for the past six years because of the internet and parents

becoming informed about the treatment options and opting to travel if their

local docs are doing surgery.

From what I can tell, there are constantly doctors in Iowa to train with Dr.

Ponseti, Morcuende (spelling?) et al.

Dr. Pirani in Canada is singlehandedly training doctors around the world in

the method. He follows the method to a T, but he admits that it's hard to

make sure doctors in the Bush in Africa are not only following the method

but have the materials to do so.

Dr. Herzenberg has large and small symposiums every year in Baltimore where

he trains over 100 docs from all over the world. Dr. Pirani spoke at the

Sept. symposium and another doc had to cancel due to a death in the family.

I think the next generation of docs who have been doing it for over 10 years

have a pretty strong network.

I do agree that the quality of the treatment is a huge concern. The only way

to monitor this is for more experienced doctors to travel and visit groups

of docs in different countries/regions, like Dr Ponseti did/does. That's

what Dr. Herzenberg had Dr. Ponseti do, come for a visit to see him in

action.

Locally, here in Fairfax County (over 1 million people) we have a pediatric

orthopedist who was not doing Ponseti 3 3/4 years ago when my daughter was

born. He's recently started doing the method but with poor results (not able

to achieve full correction, so using AFOs). Fortunately, myself and

Shook decided to start a local support group and were able to " infiltrate "

this doctor's office so that his patients are receiving flyers about our

group, calling us, and then we are telling them the truth about AFOs. These

patients are switching to Dr. Herzenberg in Baltimore. They have internet

access, but for whatever reason never found this list.

It sounds like Dr. Herzenberg will try to do a symposium for Virginia docs

here in Virginia at the suggestion of a Richmond VA parent whose son

received Ponseti treatment from the only doctor in Richmond trying to do it,

but it wasn't done properly, so now her son's being treated by Dr.

Herzenberg using the External Fixator (based on Ilizarov).

The list of doctors on the approved list has grown exponentially since I

first saw it 3 years ago. I'm sure there are many more doctors who are doing

the method but for whatever reason haven't been approved yet. Incidentally,

our second doctor is still not on Dr. POnseti's approved list although her

hospital has been doing the method for over 3 1/2 years. I'm guessing it's

because the cast tech (who is the one trained by Dr. POnseti) did all of the

casting and he has recently moved? I think there's another doc now doing the

casting, but not sure.

I encourage any people who are able to connect at the local level to start a

local support group to help spread the word. Even if it helps a few more

people access this method, it's well worth it. It really doesn't take much

time. If you have started a group, could you please contact me with the

details so I can develop a database?

I have also sent my share of emails to not only Oprah, Ellen, Montel, but

also others who may have the means and public recognition to make a

difference but haven't chosen a charity yet, like the Olsen twins.

Noah Wyle ( on ER) is a celebrity spokesperson for different

health related causes practically every month. Even if he couldn't

contribute cash, his face is so well known, if we could get him to do a PSA,

wow.

At this point, the big celebrities with clubfoot (Troy Aikman, Mia Hamm,

Kristi Yamaguchi) have already set up their own worthy charities, not

clubfoot related. I think we could invite them to attend a

fundraiser/awareness raiser, but we would have to organize everything, I

think. Perhaps Dr. Ponseti's November symposium would be a good venue? If a

celebrity were there, perhaps the media would pay attention?

Sorry so long! More to follow... Joanne W. mom to Zoe, 3-25-01, right

clubfoot

www.geocities.com/joannewalton2003/clubfootstory.html