Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 Hey Joanne It sounds great to me. We'd have to decide how to organize, get 501 C (non-profit status) and determine how to raise funds. Anyone out there with this type of experience? Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 Hey Joanne It sounds great to me. We'd have to decide how to organize, get 501 C (non-profit status) and determine how to raise funds. Anyone out there with this type of experience? Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 Hey Joanne It sounds great to me. We'd have to decide how to organize, get 501 C (non-profit status) and determine how to raise funds. Anyone out there with this type of experience? Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 Im in if anyone needs help! Alyssa and Mia We all have clubfoot and all treated with the Ponseti method! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 , Thanks for the info. I was aware from your previous posts about the efforts of Dr. Pirani, but I did not know that there were so many more developments. Sounds like things are moving along nicely... My proposal is to establish a foundation with the specific goal of raising funds to support the works of doctors who are treating clubfoot using the Ponseti method in developing countries. It would probably be a lot for one organization to raise funds and coordinate all of the medical aspects of this size project. Perhaps raising funds is what the parents/other supporters could do to be of help to the doctors. We could work on setting up a permanent fund which may at a later time be incorporated into this larger organization. It's such a huge undertaking. It's hard to figure out how to help. Joanne W. mom to Zoe (3-25-01) right clubfoot > >Message: 4 > Date: Mon, 03 Feb 2003 00:24:24 -0000 > " > >Subject: (unknown) > >Joanne, > >Yes, the effort to set up a group like that already exists. Dr. >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to >try to establish an organization that can work as a clearinghouse for >Ponseti method treatment projects to countries around the world. Dr. >Pirani has put together a systematic approach of things that would >need to be done for a system in any country. Since he has now worked >on implementing this in 4 different African countries, they have >worked out the " bugs " of the general program, training materials, >political issues, instructions for the local manufacture of a simple >FAB/DBB system and other things important to making it work. But for >each country things will be a bit different. > >One thing that is needed is a doctor who is willing to be >the " Champion " of the program in that country or region to lead the >program and also funding to cover the costs of setting it up and >following up on the program over a number of years to make sure it >becomes sustainable. I think that the costs of funding the 4 years >of the program in Uganda has been about $150,000 which included >surgical related equipment and supplies for the currently untreated >older children. The country of Uganda has incorporated the ongoing >costs into their system of health care and their medical school >training program. The initial funding of the Uganda Clubfoot Project >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a >number of other donators including British Airways for transportation >to and from Uganda. > >The U of Iowa has been working on different situations by going to >the political and medical systems in Nicaragua, Costa Rica and >Columbia to begin Ponseti method programs there. In those countries, >there are already an existing pediatric orthopedic system in the >major cities, but not perhaps as much in poorer rural settings. They >are hopeful that they can change the approach of the existing ped >orthos and medical school programs to institute the Ponseti method as >their countries mainstream method and then expand the program to the >rural clinic settings. > >I am aware of a group of doctors have a program called " Helping Hands >to Haiti " . They deal with all kinds of medical issues and have >doctors with different specialties travel from the U.S. to Haiti to >help for short periods of time at their clinic. They found out about >the Ponseti method and wanted to incorporate it into their clinic. >They contacted Dr. Pirani who had just coincidently met and had begun >corresponding with a Haitian ped ortho at the 3rd International >Congress on Clubfoot in August 2002. It turns out that this Haitian >ped ortho was already doing some things with the Helping Hands to >Haiti group. But they needed some help in setting up the system to >make the whole thing work and track the outcomes. I believe that Dr. >Pirani and/or a Shriners doctor who uses the Ponseti method will be >going to Haiti in the next few months to help get their program >started. I believe that Haiti would have about 260 children with >clubfeet per year, all within about 100 miles of this clinic. > >When Dr. Pirani was at the 3rd International Congress on Clubfoot in >August, there were a number of doctors from underdeveloped area's of >the world who were very interested in the Ponseti method and the >Uganda Clubfoot program. But most of them had not yet used the >Ponseti method yet themselves, but realized the potential impacts in >their own countries. I assume that Dr. Pirnai is corresponding with >some of those doctors. > >Dr. Pirani also has doctors from major hospital groups who have >learned and use the Ponseti method who have asked him to help find >them a country that they can adopt and go help set up a Ponseti >method treatment program. > >You can see how a central organization to coordinate doctors, >countries, production of training materials, seeking and processing >charitable funding and grants, track results of the programs and keep >the whole process organized would be very helpful. It is hoped also >that there will be at least endorsement support from POSNA and the >World Health Organization. > >Hopefully our groups can be of help in some way in these efforts. > > and (3-17-99) > _________________________________________________________________ Add photos to your messages with MSN 8. 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Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 , Thanks for the info. I was aware from your previous posts about the efforts of Dr. Pirani, but I did not know that there were so many more developments. Sounds like things are moving along nicely... My proposal is to establish a foundation with the specific goal of raising funds to support the works of doctors who are treating clubfoot using the Ponseti method in developing countries. It would probably be a lot for one organization to raise funds and coordinate all of the medical aspects of this size project. Perhaps raising funds is what the parents/other supporters could do to be of help to the doctors. We could work on setting up a permanent fund which may at a later time be incorporated into this larger organization. It's such a huge undertaking. It's hard to figure out how to help. Joanne W. mom to Zoe (3-25-01) right clubfoot > >Message: 4 > Date: Mon, 03 Feb 2003 00:24:24 -0000 > " > >Subject: (unknown) > >Joanne, > >Yes, the effort to set up a group like that already exists. Dr. >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to >try to establish an organization that can work as a clearinghouse for >Ponseti method treatment projects to countries around the world. Dr. >Pirani has put together a systematic approach of things that would >need to be done for a system in any country. Since he has now worked >on implementing this in 4 different African countries, they have >worked out the " bugs " of the general program, training materials, >political issues, instructions for the local manufacture of a simple >FAB/DBB system and other things important to making it work. But for >each country things will be a bit different. > >One thing that is needed is a doctor who is willing to be >the " Champion " of the program in that country or region to lead the >program and also funding to cover the costs of setting it up and >following up on the program over a number of years to make sure it >becomes sustainable. I think that the costs of funding the 4 years >of the program in Uganda has been about $150,000 which included >surgical related equipment and supplies for the currently untreated >older children. The country of Uganda has incorporated the ongoing >costs into their system of health care and their medical school >training program. The initial funding of the Uganda Clubfoot Project >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a >number of other donators including British Airways for transportation >to and from Uganda. > >The U of Iowa has been working on different situations by going to >the political and medical systems in Nicaragua, Costa Rica and >Columbia to begin Ponseti method programs there. In those countries, >there are already an existing pediatric orthopedic system in the >major cities, but not perhaps as much in poorer rural settings. They >are hopeful that they can change the approach of the existing ped >orthos and medical school programs to institute the Ponseti method as >their countries mainstream method and then expand the program to the >rural clinic settings. > >I am aware of a group of doctors have a program called " Helping Hands >to Haiti " . They deal with all kinds of medical issues and have >doctors with different specialties travel from the U.S. to Haiti to >help for short periods of time at their clinic. They found out about >the Ponseti method and wanted to incorporate it into their clinic. >They contacted Dr. Pirani who had just coincidently met and had begun >corresponding with a Haitian ped ortho at the 3rd International >Congress on Clubfoot in August 2002. It turns out that this Haitian >ped ortho was already doing some things with the Helping Hands to >Haiti group. But they needed some help in setting up the system to >make the whole thing work and track the outcomes. I believe that Dr. >Pirani and/or a Shriners doctor who uses the Ponseti method will be >going to Haiti in the next few months to help get their program >started. I believe that Haiti would have about 260 children with >clubfeet per year, all within about 100 miles of this clinic. > >When Dr. Pirani was at the 3rd International Congress on Clubfoot in >August, there were a number of doctors from underdeveloped area's of >the world who were very interested in the Ponseti method and the >Uganda Clubfoot program. But most of them had not yet used the >Ponseti method yet themselves, but realized the potential impacts in >their own countries. I assume that Dr. Pirnai is corresponding with >some of those doctors. > >Dr. Pirani also has doctors from major hospital groups who have >learned and use the Ponseti method who have asked him to help find >them a country that they can adopt and go help set up a Ponseti >method treatment program. > >You can see how a central organization to coordinate doctors, >countries, production of training materials, seeking and processing >charitable funding and grants, track results of the programs and keep >the whole process organized would be very helpful. It is hoped also >that there will be at least endorsement support from POSNA and the >World Health Organization. > >Hopefully our groups can be of help in some way in these efforts. > > and (3-17-99) > _________________________________________________________________ Add photos to your messages with MSN 8. 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Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, These are currently the existing vehicles that could be used for individuals to donate money to help in the effort to expand the use of the Ponseti method. There are probably also other things that can be done. I know that Dr. Pirani and Dr. Morcuende are in contact allot about their combined efforts and working with other doctors who may be trying to institute projects at clinics that they are already involved with in underdeveloped areas of the world. The existing sytems are: 1. An existing fund at the U of Iowa that Dr. Ponseti directs. Dr. Ponseti can be contacted at Telephone: (319)356-3469 Address: University of Iowa Hospitals and Clinics 200 Hawkins Drive 010255 JPP Iowa City, IA 52242 Via E-mail: ignacio-ponseti @ uiowa.edu http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/contact.html 2. Dr. Pirani in Vancouver. Most of Dr. Pirani's funding has come from Rotary Clubs in Canada, California and Uganda as well as individual and corporate " in kind " donors such as British Airways for travel. He also has some friends who are grant writers who apply for additional funding through different charitable groups. The International Rotary Organization is a bit swamped now because they had committed to raise about $50,0000,0000 to eradicate polio worldwide about 10 years ago in an effort that is nearing completion. Dr. Pirani's address is Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: Fax: E-mail: piras @ aol.com 3. Charity Balliger of our internet site has been setting up a Non- Profit organization in California to help raise and distribute funds. I am not sure of the status of this project at the moment. Charity had come to 3rd International Congress on Clubfoot and has discussed the non-profit that she has about gotten set up. http://groups.yahoo.com/group/nosurgery4clubfoot/message/12539 As far as the fund at the U of Iowa. Dr. Ponseti has a fund that is attached to the University of Iowa that has money in it from people who have wanted to help. I believe that some of these funds have been used to help do Public Relations efforts to get information into more mainstream media. Some of the funds have also been used to help start the programs in Nicaragua, Costa Rica and Columbia. As I had mentioned before, Dr. Morcuende (at the U of Iowa) said that the first one week trip to train all of the nine pediatric orthopedists in Nicaragua in April 2002 cost about $2,500 from the Ponseti fund at the U of Iowa. The following details were from a May message on this site about the POSNA convention. Dr. Morcuende from the U of Iowa then spoke on his recent trip to Nicaragua to begin implementation of a national clubfoot treatment program as well. Nicaragua is a country of about 4 million that has some existing medical and hospital systems in the main cities and has 9 pediatric orthopedists. He said that under the prior system, that parents would have to go find an purchase their own plaster bandages and bring them to the hospital for casting, because the hospital didn't have the material. Those who had the money and resources to get into the main hospital would get treatment and many who were either poor or in the outlying rural areas may not get much in the way of treatment. He said that 2 weeks ago he was in Managua, Nicaragua for one week to try to implement a national system of early treatment for clubfoot. Meetings had been arranged for him to meet with the National Minister of Health and the countries 9 pediatric orthopedists. He also was able to meet the first lady of Nicaragua and explain the program to her. One or two of the ped orthos had already been trying to implement the Ponseti method and Dr. Morcuende trained all nine in the method. During the next few months, the Nicaraguan doctors will be implementing the Ponseti method in Managua while a system is being developed to train rural clinics in how to identify and educate local midwives, etc and have the local clinics be able to do the Ponseti method. Then only children for whom the Ponseti method did not work initially would be referred into the Main Hospital for either further Ponseti treatment or the surgery. Part of the national program will be to insure that casting and FAB supplies are available. It is possible that they will try to figure out local production of a simpler FAB like was done in Uganda. In a few months, Dr. Morcuende will return to Nicaragua to see how well they are implementing the method in the major hospital and work with them on the program to train the rural clinics. http://groups.yahoo.com/group/nosurgery4clubfoot/message/11029 Since May 2002, the U of Iowa has also been working on programs for Costa Rica and parts of Columbia (to begin with). They are hopeful to work on other Central and South American projects as opportunities come up. Perhaps there are other method, means or ideas that we can come up with that will help. I am sure that there is a place that each of us can play in trying to make this available to all parents. and (3-17-99) > > , > > Thanks for the info. I was aware from your previous posts about the efforts > of Dr. Pirani, but I did not know that there were so many more developments. > Sounds like things are moving along nicely... > > My proposal is to establish a foundation with the specific goal of raising > funds to support the works of doctors who are treating clubfoot using the > Ponseti method in developing countries. > > It would probably be a lot for one organization to raise funds and > coordinate all of the medical aspects of this size project. > > Perhaps raising funds is what the parents/other supporters could do to be of > help to the doctors. We could work on setting up a permanent fund which may > at a later time be incorporated into this larger organization. It's such a > huge undertaking. It's hard to figure out how to help. > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > >Message: 4 > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > From: " Egbert <martinegbert@e...> " > ><martinegbert@e...> > >Subject: (unknown) > > > >Joanne, > > > >Yes, the effort to set up a group like that already exists. Dr. > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > >try to establish an organization that can work as a clearinghouse for > >Ponseti method treatment projects to countries around the world. Dr. > >Pirani has put together a systematic approach of things that would > >need to be done for a system in any country. Since he has now worked > >on implementing this in 4 different African countries, they have > >worked out the " bugs " of the general program, training materials, > >political issues, instructions for the local manufacture of a simple > >FAB/DBB system and other things important to making it work. But for > >each country things will be a bit different. > > > >One thing that is needed is a doctor who is willing to be > >the " Champion " of the program in that country or region to lead the > >program and also funding to cover the costs of setting it up and > >following up on the program over a number of years to make sure it > >becomes sustainable. I think that the costs of funding the 4 years > >of the program in Uganda has been about $150,000 which included > >surgical related equipment and supplies for the currently untreated > >older children. The country of Uganda has incorporated the ongoing > >costs into their system of health care and their medical school > >training program. The initial funding of the Uganda Clubfoot Project > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > >number of other donators including British Airways for transportation > >to and from Uganda. > > > >The U of Iowa has been working on different situations by going to > >the political and medical systems in Nicaragua, Costa Rica and > >Columbia to begin Ponseti method programs there. In those countries, > >there are already an existing pediatric orthopedic system in the > >major cities, but not perhaps as much in poorer rural settings. They > >are hopeful that they can change the approach of the existing ped > >orthos and medical school programs to institute the Ponseti method as > >their countries mainstream method and then expand the program to the > >rural clinic settings. > > > >I am aware of a group of doctors have a program called " Helping Hands > >to Haiti " . They deal with all kinds of medical issues and have > >doctors with different specialties travel from the U.S. to Haiti to > >help for short periods of time at their clinic. They found out about > >the Ponseti method and wanted to incorporate it into their clinic. > >They contacted Dr. Pirani who had just coincidently met and had begun > >corresponding with a Haitian ped ortho at the 3rd International > >Congress on Clubfoot in August 2002. It turns out that this Haitian > >ped ortho was already doing some things with the Helping Hands to > >Haiti group. But they needed some help in setting up the system to > >make the whole thing work and track the outcomes. I believe that Dr. > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > >going to Haiti in the next few months to help get their program > >started. I believe that Haiti would have about 260 children with > >clubfeet per year, all within about 100 miles of this clinic. > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot in > >August, there were a number of doctors from underdeveloped area's of > >the world who were very interested in the Ponseti method and the > >Uganda Clubfoot program. But most of them had not yet used the > >Ponseti method yet themselves, but realized the potential impacts in > >their own countries. I assume that Dr. Pirnai is corresponding with > >some of those doctors. > > > >Dr. Pirani also has doctors from major hospital groups who have > >learned and use the Ponseti method who have asked him to help find > >them a country that they can adopt and go help set up a Ponseti > >method treatment program. > > > >You can see how a central organization to coordinate doctors, > >countries, production of training materials, seeking and processing > >charitable funding and grants, track results of the programs and keep > >the whole process organized would be very helpful. It is hoped also > >that there will be at least endorsement support from POSNA and the > >World Health Organization. > > > >Hopefully our groups can be of help in some way in these efforts. > > > > and (3-17-99) > > > > _________________________________________________________________ > Add photos to your messages with MSN 8. Get 2 months FREE*. > http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, These are currently the existing vehicles that could be used for individuals to donate money to help in the effort to expand the use of the Ponseti method. There are probably also other things that can be done. I know that Dr. Pirani and Dr. Morcuende are in contact allot about their combined efforts and working with other doctors who may be trying to institute projects at clinics that they are already involved with in underdeveloped areas of the world. The existing sytems are: 1. An existing fund at the U of Iowa that Dr. Ponseti directs. Dr. Ponseti can be contacted at Telephone: (319)356-3469 Address: University of Iowa Hospitals and Clinics 200 Hawkins Drive 010255 JPP Iowa City, IA 52242 Via E-mail: ignacio-ponseti @ uiowa.edu http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/contact.html 2. Dr. Pirani in Vancouver. Most of Dr. Pirani's funding has come from Rotary Clubs in Canada, California and Uganda as well as individual and corporate " in kind " donors such as British Airways for travel. He also has some friends who are grant writers who apply for additional funding through different charitable groups. The International Rotary Organization is a bit swamped now because they had committed to raise about $50,0000,0000 to eradicate polio worldwide about 10 years ago in an effort that is nearing completion. Dr. Pirani's address is Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: Fax: E-mail: piras @ aol.com 3. Charity Balliger of our internet site has been setting up a Non- Profit organization in California to help raise and distribute funds. I am not sure of the status of this project at the moment. Charity had come to 3rd International Congress on Clubfoot and has discussed the non-profit that she has about gotten set up. http://groups.yahoo.com/group/nosurgery4clubfoot/message/12539 As far as the fund at the U of Iowa. Dr. Ponseti has a fund that is attached to the University of Iowa that has money in it from people who have wanted to help. I believe that some of these funds have been used to help do Public Relations efforts to get information into more mainstream media. Some of the funds have also been used to help start the programs in Nicaragua, Costa Rica and Columbia. As I had mentioned before, Dr. Morcuende (at the U of Iowa) said that the first one week trip to train all of the nine pediatric orthopedists in Nicaragua in April 2002 cost about $2,500 from the Ponseti fund at the U of Iowa. The following details were from a May message on this site about the POSNA convention. Dr. Morcuende from the U of Iowa then spoke on his recent trip to Nicaragua to begin implementation of a national clubfoot treatment program as well. Nicaragua is a country of about 4 million that has some existing medical and hospital systems in the main cities and has 9 pediatric orthopedists. He said that under the prior system, that parents would have to go find an purchase their own plaster bandages and bring them to the hospital for casting, because the hospital didn't have the material. Those who had the money and resources to get into the main hospital would get treatment and many who were either poor or in the outlying rural areas may not get much in the way of treatment. He said that 2 weeks ago he was in Managua, Nicaragua for one week to try to implement a national system of early treatment for clubfoot. Meetings had been arranged for him to meet with the National Minister of Health and the countries 9 pediatric orthopedists. He also was able to meet the first lady of Nicaragua and explain the program to her. One or two of the ped orthos had already been trying to implement the Ponseti method and Dr. Morcuende trained all nine in the method. During the next few months, the Nicaraguan doctors will be implementing the Ponseti method in Managua while a system is being developed to train rural clinics in how to identify and educate local midwives, etc and have the local clinics be able to do the Ponseti method. Then only children for whom the Ponseti method did not work initially would be referred into the Main Hospital for either further Ponseti treatment or the surgery. Part of the national program will be to insure that casting and FAB supplies are available. It is possible that they will try to figure out local production of a simpler FAB like was done in Uganda. In a few months, Dr. Morcuende will return to Nicaragua to see how well they are implementing the method in the major hospital and work with them on the program to train the rural clinics. http://groups.yahoo.com/group/nosurgery4clubfoot/message/11029 Since May 2002, the U of Iowa has also been working on programs for Costa Rica and parts of Columbia (to begin with). They are hopeful to work on other Central and South American projects as opportunities come up. Perhaps there are other method, means or ideas that we can come up with that will help. I am sure that there is a place that each of us can play in trying to make this available to all parents. and (3-17-99) > > , > > Thanks for the info. I was aware from your previous posts about the efforts > of Dr. Pirani, but I did not know that there were so many more developments. > Sounds like things are moving along nicely... > > My proposal is to establish a foundation with the specific goal of raising > funds to support the works of doctors who are treating clubfoot using the > Ponseti method in developing countries. > > It would probably be a lot for one organization to raise funds and > coordinate all of the medical aspects of this size project. > > Perhaps raising funds is what the parents/other supporters could do to be of > help to the doctors. We could work on setting up a permanent fund which may > at a later time be incorporated into this larger organization. It's such a > huge undertaking. It's hard to figure out how to help. > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > >Message: 4 > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > From: " Egbert <martinegbert@e...> " > ><martinegbert@e...> > >Subject: (unknown) > > > >Joanne, > > > >Yes, the effort to set up a group like that already exists. Dr. > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > >try to establish an organization that can work as a clearinghouse for > >Ponseti method treatment projects to countries around the world. Dr. > >Pirani has put together a systematic approach of things that would > >need to be done for a system in any country. Since he has now worked > >on implementing this in 4 different African countries, they have > >worked out the " bugs " of the general program, training materials, > >political issues, instructions for the local manufacture of a simple > >FAB/DBB system and other things important to making it work. But for > >each country things will be a bit different. > > > >One thing that is needed is a doctor who is willing to be > >the " Champion " of the program in that country or region to lead the > >program and also funding to cover the costs of setting it up and > >following up on the program over a number of years to make sure it > >becomes sustainable. I think that the costs of funding the 4 years > >of the program in Uganda has been about $150,000 which included > >surgical related equipment and supplies for the currently untreated > >older children. The country of Uganda has incorporated the ongoing > >costs into their system of health care and their medical school > >training program. The initial funding of the Uganda Clubfoot Project > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > >number of other donators including British Airways for transportation > >to and from Uganda. > > > >The U of Iowa has been working on different situations by going to > >the political and medical systems in Nicaragua, Costa Rica and > >Columbia to begin Ponseti method programs there. In those countries, > >there are already an existing pediatric orthopedic system in the > >major cities, but not perhaps as much in poorer rural settings. They > >are hopeful that they can change the approach of the existing ped > >orthos and medical school programs to institute the Ponseti method as > >their countries mainstream method and then expand the program to the > >rural clinic settings. > > > >I am aware of a group of doctors have a program called " Helping Hands > >to Haiti " . They deal with all kinds of medical issues and have > >doctors with different specialties travel from the U.S. to Haiti to > >help for short periods of time at their clinic. They found out about > >the Ponseti method and wanted to incorporate it into their clinic. > >They contacted Dr. Pirani who had just coincidently met and had begun > >corresponding with a Haitian ped ortho at the 3rd International > >Congress on Clubfoot in August 2002. It turns out that this Haitian > >ped ortho was already doing some things with the Helping Hands to > >Haiti group. But they needed some help in setting up the system to > >make the whole thing work and track the outcomes. I believe that Dr. > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > >going to Haiti in the next few months to help get their program > >started. I believe that Haiti would have about 260 children with > >clubfeet per year, all within about 100 miles of this clinic. > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot in > >August, there were a number of doctors from underdeveloped area's of > >the world who were very interested in the Ponseti method and the > >Uganda Clubfoot program. But most of them had not yet used the > >Ponseti method yet themselves, but realized the potential impacts in > >their own countries. I assume that Dr. Pirnai is corresponding with > >some of those doctors. > > > >Dr. Pirani also has doctors from major hospital groups who have > >learned and use the Ponseti method who have asked him to help find > >them a country that they can adopt and go help set up a Ponseti > >method treatment program. > > > >You can see how a central organization to coordinate doctors, > >countries, production of training materials, seeking and processing > >charitable funding and grants, track results of the programs and keep > >the whole process organized would be very helpful. It is hoped also > >that there will be at least endorsement support from POSNA and the > >World Health Organization. > > > >Hopefully our groups can be of help in some way in these efforts. > > > > and (3-17-99) > > > > _________________________________________________________________ > Add photos to your messages with MSN 8. 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Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, These are currently the existing vehicles that could be used for individuals to donate money to help in the effort to expand the use of the Ponseti method. There are probably also other things that can be done. I know that Dr. Pirani and Dr. Morcuende are in contact allot about their combined efforts and working with other doctors who may be trying to institute projects at clinics that they are already involved with in underdeveloped areas of the world. The existing sytems are: 1. An existing fund at the U of Iowa that Dr. Ponseti directs. Dr. Ponseti can be contacted at Telephone: (319)356-3469 Address: University of Iowa Hospitals and Clinics 200 Hawkins Drive 010255 JPP Iowa City, IA 52242 Via E-mail: ignacio-ponseti @ uiowa.edu http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/contact.html 2. Dr. Pirani in Vancouver. Most of Dr. Pirani's funding has come from Rotary Clubs in Canada, California and Uganda as well as individual and corporate " in kind " donors such as British Airways for travel. He also has some friends who are grant writers who apply for additional funding through different charitable groups. The International Rotary Organization is a bit swamped now because they had committed to raise about $50,0000,0000 to eradicate polio worldwide about 10 years ago in an effort that is nearing completion. Dr. Pirani's address is Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: Fax: E-mail: piras @ aol.com 3. Charity Balliger of our internet site has been setting up a Non- Profit organization in California to help raise and distribute funds. I am not sure of the status of this project at the moment. Charity had come to 3rd International Congress on Clubfoot and has discussed the non-profit that she has about gotten set up. http://groups.yahoo.com/group/nosurgery4clubfoot/message/12539 As far as the fund at the U of Iowa. Dr. Ponseti has a fund that is attached to the University of Iowa that has money in it from people who have wanted to help. I believe that some of these funds have been used to help do Public Relations efforts to get information into more mainstream media. Some of the funds have also been used to help start the programs in Nicaragua, Costa Rica and Columbia. As I had mentioned before, Dr. Morcuende (at the U of Iowa) said that the first one week trip to train all of the nine pediatric orthopedists in Nicaragua in April 2002 cost about $2,500 from the Ponseti fund at the U of Iowa. The following details were from a May message on this site about the POSNA convention. Dr. Morcuende from the U of Iowa then spoke on his recent trip to Nicaragua to begin implementation of a national clubfoot treatment program as well. Nicaragua is a country of about 4 million that has some existing medical and hospital systems in the main cities and has 9 pediatric orthopedists. He said that under the prior system, that parents would have to go find an purchase their own plaster bandages and bring them to the hospital for casting, because the hospital didn't have the material. Those who had the money and resources to get into the main hospital would get treatment and many who were either poor or in the outlying rural areas may not get much in the way of treatment. He said that 2 weeks ago he was in Managua, Nicaragua for one week to try to implement a national system of early treatment for clubfoot. Meetings had been arranged for him to meet with the National Minister of Health and the countries 9 pediatric orthopedists. He also was able to meet the first lady of Nicaragua and explain the program to her. One or two of the ped orthos had already been trying to implement the Ponseti method and Dr. Morcuende trained all nine in the method. During the next few months, the Nicaraguan doctors will be implementing the Ponseti method in Managua while a system is being developed to train rural clinics in how to identify and educate local midwives, etc and have the local clinics be able to do the Ponseti method. Then only children for whom the Ponseti method did not work initially would be referred into the Main Hospital for either further Ponseti treatment or the surgery. Part of the national program will be to insure that casting and FAB supplies are available. It is possible that they will try to figure out local production of a simpler FAB like was done in Uganda. In a few months, Dr. Morcuende will return to Nicaragua to see how well they are implementing the method in the major hospital and work with them on the program to train the rural clinics. http://groups.yahoo.com/group/nosurgery4clubfoot/message/11029 Since May 2002, the U of Iowa has also been working on programs for Costa Rica and parts of Columbia (to begin with). They are hopeful to work on other Central and South American projects as opportunities come up. Perhaps there are other method, means or ideas that we can come up with that will help. I am sure that there is a place that each of us can play in trying to make this available to all parents. and (3-17-99) > > , > > Thanks for the info. I was aware from your previous posts about the efforts > of Dr. Pirani, but I did not know that there were so many more developments. > Sounds like things are moving along nicely... > > My proposal is to establish a foundation with the specific goal of raising > funds to support the works of doctors who are treating clubfoot using the > Ponseti method in developing countries. > > It would probably be a lot for one organization to raise funds and > coordinate all of the medical aspects of this size project. > > Perhaps raising funds is what the parents/other supporters could do to be of > help to the doctors. We could work on setting up a permanent fund which may > at a later time be incorporated into this larger organization. It's such a > huge undertaking. It's hard to figure out how to help. > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > >Message: 4 > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > From: " Egbert <martinegbert@e...> " > ><martinegbert@e...> > >Subject: (unknown) > > > >Joanne, > > > >Yes, the effort to set up a group like that already exists. Dr. > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > >try to establish an organization that can work as a clearinghouse for > >Ponseti method treatment projects to countries around the world. Dr. > >Pirani has put together a systematic approach of things that would > >need to be done for a system in any country. Since he has now worked > >on implementing this in 4 different African countries, they have > >worked out the " bugs " of the general program, training materials, > >political issues, instructions for the local manufacture of a simple > >FAB/DBB system and other things important to making it work. But for > >each country things will be a bit different. > > > >One thing that is needed is a doctor who is willing to be > >the " Champion " of the program in that country or region to lead the > >program and also funding to cover the costs of setting it up and > >following up on the program over a number of years to make sure it > >becomes sustainable. I think that the costs of funding the 4 years > >of the program in Uganda has been about $150,000 which included > >surgical related equipment and supplies for the currently untreated > >older children. The country of Uganda has incorporated the ongoing > >costs into their system of health care and their medical school > >training program. The initial funding of the Uganda Clubfoot Project > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > >number of other donators including British Airways for transportation > >to and from Uganda. > > > >The U of Iowa has been working on different situations by going to > >the political and medical systems in Nicaragua, Costa Rica and > >Columbia to begin Ponseti method programs there. In those countries, > >there are already an existing pediatric orthopedic system in the > >major cities, but not perhaps as much in poorer rural settings. They > >are hopeful that they can change the approach of the existing ped > >orthos and medical school programs to institute the Ponseti method as > >their countries mainstream method and then expand the program to the > >rural clinic settings. > > > >I am aware of a group of doctors have a program called " Helping Hands > >to Haiti " . They deal with all kinds of medical issues and have > >doctors with different specialties travel from the U.S. to Haiti to > >help for short periods of time at their clinic. They found out about > >the Ponseti method and wanted to incorporate it into their clinic. > >They contacted Dr. Pirani who had just coincidently met and had begun > >corresponding with a Haitian ped ortho at the 3rd International > >Congress on Clubfoot in August 2002. It turns out that this Haitian > >ped ortho was already doing some things with the Helping Hands to > >Haiti group. But they needed some help in setting up the system to > >make the whole thing work and track the outcomes. I believe that Dr. > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > >going to Haiti in the next few months to help get their program > >started. I believe that Haiti would have about 260 children with > >clubfeet per year, all within about 100 miles of this clinic. > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot in > >August, there were a number of doctors from underdeveloped area's of > >the world who were very interested in the Ponseti method and the > >Uganda Clubfoot program. But most of them had not yet used the > >Ponseti method yet themselves, but realized the potential impacts in > >their own countries. I assume that Dr. Pirnai is corresponding with > >some of those doctors. > > > >Dr. Pirani also has doctors from major hospital groups who have > >learned and use the Ponseti method who have asked him to help find > >them a country that they can adopt and go help set up a Ponseti > >method treatment program. > > > >You can see how a central organization to coordinate doctors, > >countries, production of training materials, seeking and processing > >charitable funding and grants, track results of the programs and keep > >the whole process organized would be very helpful. It is hoped also > >that there will be at least endorsement support from POSNA and the > >World Health Organization. > > > >Hopefully our groups can be of help in some way in these efforts. > > > > and (3-17-99) > > > > _________________________________________________________________ > Add photos to your messages with MSN 8. 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Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, But also it may be good to have a separate foundation, organization or whatever that we can use as a Parents Organization that that do a lot of things including gathering funds from different charitable sources for specific projects that we may choose. A great example of a foundation that is doing the things that we could is the U.K.'s STEPS organization. It was founded by Sue Banton in 1980 before the internet existed. At their site they say. What is STEPS? Twenty years ago, families of children with lower limb abnormalities had nowhere to turn. This was the situation Sue Banton found herself in following the birth of her son with club feet. The frustration and isolation she faced motivated her to set up STEPS as a self-help group in 1980. Eight years later, STEPS became a registered charity and now helps over 2,000 families a year. How can STEPS help? The first thing we want you to know is that you're not alone! We have been offering support to parents just like you for over 20 years. We can help by; Telephone help-line The help-line is available Mon - Fri, 9.30am to 4.00pm for advice by telephone if there is something you need to know. Please feel free to phone, write, e-mail or even visit us at the Resource Centre in Lymm. Further information We have booklets and leaflets on Developmental Dysplasia of the Hip, Congenital Talipes Equinovarus (club foot) and Lower Limb Deficiencies, a regular magazine and equipment / aid lists. We also have a comprehensive library of information relating to conditions affecting lower limbs. Getting together Each year STEPS organises an annual event (There most recent one was a Ponseti method training clinic in Manchester, England http://www.steps-charity.org.uk/main/manchester.htm ) which not only reviews the current thinking on lower limb abnormalities but allows you to meet experts (such as Orthopaedic Consultants) in an informal setting and brings together families who share your experience. There are also groups and branches of STEPS throughout the country - we can let you know if there is one local to you. Donations We hope you find this Internet site useful. Please let us know what you think by contacting sue@.... If you want to support our work please make an online donation by going to and on 'search' type in steps and then choose National Association for Children with Lower Limb Abnormalities - STEPS and follow the instructions. The site is located at http://www.steps-charity.org.uk/index.html I think that it would be a great idea if we could figure out how to do something like STEPS. and (3-17-99) > > > > , > > > > Thanks for the info. I was aware from your previous posts about the > efforts > > of Dr. Pirani, but I did not know that there were so many more > developments. > > Sounds like things are moving along nicely... > > > > My proposal is to establish a foundation with the specific goal of > raising > > funds to support the works of doctors who are treating clubfoot > using the > > Ponseti method in developing countries. > > > > It would probably be a lot for one organization to raise funds and > > coordinate all of the medical aspects of this size project. > > > > Perhaps raising funds is what the parents/other supporters could do > to be of > > help to the doctors. We could work on setting up a permanent fund > which may > > at a later time be incorporated into this larger organization. It's > such a > > huge undertaking. It's hard to figure out how to help. > > > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > > > > >Message: 4 > > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > > From: " Egbert <martinegbert@e...> " > > ><martinegbert@e...> > > >Subject: (unknown) > > > > > >Joanne, > > > > > >Yes, the effort to set up a group like that already exists. Dr. > > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > > >try to establish an organization that can work as a clearinghouse > for > > >Ponseti method treatment projects to countries around the world. > Dr. > > >Pirani has put together a systematic approach of things that would > > >need to be done for a system in any country. Since he has now > worked > > >on implementing this in 4 different African countries, they have > > >worked out the " bugs " of the general program, training materials, > > >political issues, instructions for the local manufacture of a > simple > > >FAB/DBB system and other things important to making it work. But > for > > >each country things will be a bit different. > > > > > >One thing that is needed is a doctor who is willing to be > > >the " Champion " of the program in that country or region to lead the > > >program and also funding to cover the costs of setting it up and > > >following up on the program over a number of years to make sure it > > >becomes sustainable. I think that the costs of funding the 4 years > > >of the program in Uganda has been about $150,000 which included > > >surgical related equipment and supplies for the currently untreated > > >older children. The country of Uganda has incorporated the ongoing > > >costs into their system of health care and their medical school > > >training program. The initial funding of the Uganda Clubfoot > Project > > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > > >number of other donators including British Airways for > transportation > > >to and from Uganda. > > > > > >The U of Iowa has been working on different situations by going to > > >the political and medical systems in Nicaragua, Costa Rica and > > >Columbia to begin Ponseti method programs there. In those > countries, > > >there are already an existing pediatric orthopedic system in the > > >major cities, but not perhaps as much in poorer rural settings. > They > > >are hopeful that they can change the approach of the existing ped > > >orthos and medical school programs to institute the Ponseti method > as > > >their countries mainstream method and then expand the program to > the > > >rural clinic settings. > > > > > >I am aware of a group of doctors have a program called " Helping > Hands > > >to Haiti " . They deal with all kinds of medical issues and have > > >doctors with different specialties travel from the U.S. to Haiti to > > >help for short periods of time at their clinic. They found out > about > > >the Ponseti method and wanted to incorporate it into their clinic. > > >They contacted Dr. Pirani who had just coincidently met and had > begun > > >corresponding with a Haitian ped ortho at the 3rd International > > >Congress on Clubfoot in August 2002. It turns out that this > Haitian > > >ped ortho was already doing some things with the Helping Hands to > > >Haiti group. But they needed some help in setting up the system to > > >make the whole thing work and track the outcomes. I believe that > Dr. > > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > > >going to Haiti in the next few months to help get their program > > >started. I believe that Haiti would have about 260 children with > > >clubfeet per year, all within about 100 miles of this clinic. > > > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot > in > > >August, there were a number of doctors from underdeveloped area's > of > > >the world who were very interested in the Ponseti method and the > > >Uganda Clubfoot program. But most of them had not yet used the > > >Ponseti method yet themselves, but realized the potential impacts > in > > >their own countries. I assume that Dr. Pirnai is corresponding > with > > >some of those doctors. > > > > > >Dr. Pirani also has doctors from major hospital groups who have > > >learned and use the Ponseti method who have asked him to help find > > >them a country that they can adopt and go help set up a Ponseti > > >method treatment program. > > > > > >You can see how a central organization to coordinate doctors, > > >countries, production of training materials, seeking and processing > > >charitable funding and grants, track results of the programs and > keep > > >the whole process organized would be very helpful. It is hoped > also > > >that there will be at least endorsement support from POSNA and the > > >World Health Organization. > > > > > >Hopefully our groups can be of help in some way in these efforts. > > > > > > and (3-17-99) > > > > > > > _________________________________________________________________ > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, But also it may be good to have a separate foundation, organization or whatever that we can use as a Parents Organization that that do a lot of things including gathering funds from different charitable sources for specific projects that we may choose. A great example of a foundation that is doing the things that we could is the U.K.'s STEPS organization. It was founded by Sue Banton in 1980 before the internet existed. At their site they say. What is STEPS? Twenty years ago, families of children with lower limb abnormalities had nowhere to turn. This was the situation Sue Banton found herself in following the birth of her son with club feet. The frustration and isolation she faced motivated her to set up STEPS as a self-help group in 1980. Eight years later, STEPS became a registered charity and now helps over 2,000 families a year. How can STEPS help? The first thing we want you to know is that you're not alone! We have been offering support to parents just like you for over 20 years. We can help by; Telephone help-line The help-line is available Mon - Fri, 9.30am to 4.00pm for advice by telephone if there is something you need to know. Please feel free to phone, write, e-mail or even visit us at the Resource Centre in Lymm. Further information We have booklets and leaflets on Developmental Dysplasia of the Hip, Congenital Talipes Equinovarus (club foot) and Lower Limb Deficiencies, a regular magazine and equipment / aid lists. We also have a comprehensive library of information relating to conditions affecting lower limbs. Getting together Each year STEPS organises an annual event (There most recent one was a Ponseti method training clinic in Manchester, England http://www.steps-charity.org.uk/main/manchester.htm ) which not only reviews the current thinking on lower limb abnormalities but allows you to meet experts (such as Orthopaedic Consultants) in an informal setting and brings together families who share your experience. There are also groups and branches of STEPS throughout the country - we can let you know if there is one local to you. Donations We hope you find this Internet site useful. Please let us know what you think by contacting sue@.... If you want to support our work please make an online donation by going to and on 'search' type in steps and then choose National Association for Children with Lower Limb Abnormalities - STEPS and follow the instructions. The site is located at http://www.steps-charity.org.uk/index.html I think that it would be a great idea if we could figure out how to do something like STEPS. and (3-17-99) > > > > , > > > > Thanks for the info. I was aware from your previous posts about the > efforts > > of Dr. Pirani, but I did not know that there were so many more > developments. > > Sounds like things are moving along nicely... > > > > My proposal is to establish a foundation with the specific goal of > raising > > funds to support the works of doctors who are treating clubfoot > using the > > Ponseti method in developing countries. > > > > It would probably be a lot for one organization to raise funds and > > coordinate all of the medical aspects of this size project. > > > > Perhaps raising funds is what the parents/other supporters could do > to be of > > help to the doctors. We could work on setting up a permanent fund > which may > > at a later time be incorporated into this larger organization. It's > such a > > huge undertaking. It's hard to figure out how to help. > > > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > > > > >Message: 4 > > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > > From: " Egbert <martinegbert@e...> " > > ><martinegbert@e...> > > >Subject: (unknown) > > > > > >Joanne, > > > > > >Yes, the effort to set up a group like that already exists. Dr. > > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > > >try to establish an organization that can work as a clearinghouse > for > > >Ponseti method treatment projects to countries around the world. > Dr. > > >Pirani has put together a systematic approach of things that would > > >need to be done for a system in any country. Since he has now > worked > > >on implementing this in 4 different African countries, they have > > >worked out the " bugs " of the general program, training materials, > > >political issues, instructions for the local manufacture of a > simple > > >FAB/DBB system and other things important to making it work. But > for > > >each country things will be a bit different. > > > > > >One thing that is needed is a doctor who is willing to be > > >the " Champion " of the program in that country or region to lead the > > >program and also funding to cover the costs of setting it up and > > >following up on the program over a number of years to make sure it > > >becomes sustainable. I think that the costs of funding the 4 years > > >of the program in Uganda has been about $150,000 which included > > >surgical related equipment and supplies for the currently untreated > > >older children. The country of Uganda has incorporated the ongoing > > >costs into their system of health care and their medical school > > >training program. The initial funding of the Uganda Clubfoot > Project > > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > > >number of other donators including British Airways for > transportation > > >to and from Uganda. > > > > > >The U of Iowa has been working on different situations by going to > > >the political and medical systems in Nicaragua, Costa Rica and > > >Columbia to begin Ponseti method programs there. In those > countries, > > >there are already an existing pediatric orthopedic system in the > > >major cities, but not perhaps as much in poorer rural settings. > They > > >are hopeful that they can change the approach of the existing ped > > >orthos and medical school programs to institute the Ponseti method > as > > >their countries mainstream method and then expand the program to > the > > >rural clinic settings. > > > > > >I am aware of a group of doctors have a program called " Helping > Hands > > >to Haiti " . They deal with all kinds of medical issues and have > > >doctors with different specialties travel from the U.S. to Haiti to > > >help for short periods of time at their clinic. They found out > about > > >the Ponseti method and wanted to incorporate it into their clinic. > > >They contacted Dr. Pirani who had just coincidently met and had > begun > > >corresponding with a Haitian ped ortho at the 3rd International > > >Congress on Clubfoot in August 2002. It turns out that this > Haitian > > >ped ortho was already doing some things with the Helping Hands to > > >Haiti group. But they needed some help in setting up the system to > > >make the whole thing work and track the outcomes. I believe that > Dr. > > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > > >going to Haiti in the next few months to help get their program > > >started. I believe that Haiti would have about 260 children with > > >clubfeet per year, all within about 100 miles of this clinic. > > > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot > in > > >August, there were a number of doctors from underdeveloped area's > of > > >the world who were very interested in the Ponseti method and the > > >Uganda Clubfoot program. But most of them had not yet used the > > >Ponseti method yet themselves, but realized the potential impacts > in > > >their own countries. I assume that Dr. Pirnai is corresponding > with > > >some of those doctors. > > > > > >Dr. Pirani also has doctors from major hospital groups who have > > >learned and use the Ponseti method who have asked him to help find > > >them a country that they can adopt and go help set up a Ponseti > > >method treatment program. > > > > > >You can see how a central organization to coordinate doctors, > > >countries, production of training materials, seeking and processing > > >charitable funding and grants, track results of the programs and > keep > > >the whole process organized would be very helpful. It is hoped > also > > >that there will be at least endorsement support from POSNA and the > > >World Health Organization. > > > > > >Hopefully our groups can be of help in some way in these efforts. > > > > > > and (3-17-99) > > > > > > > _________________________________________________________________ > > Add photos to your messages with MSN 8. Get 2 months FREE*. > > http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Joanne, But also it may be good to have a separate foundation, organization or whatever that we can use as a Parents Organization that that do a lot of things including gathering funds from different charitable sources for specific projects that we may choose. A great example of a foundation that is doing the things that we could is the U.K.'s STEPS organization. It was founded by Sue Banton in 1980 before the internet existed. At their site they say. What is STEPS? Twenty years ago, families of children with lower limb abnormalities had nowhere to turn. This was the situation Sue Banton found herself in following the birth of her son with club feet. The frustration and isolation she faced motivated her to set up STEPS as a self-help group in 1980. Eight years later, STEPS became a registered charity and now helps over 2,000 families a year. How can STEPS help? The first thing we want you to know is that you're not alone! We have been offering support to parents just like you for over 20 years. We can help by; Telephone help-line The help-line is available Mon - Fri, 9.30am to 4.00pm for advice by telephone if there is something you need to know. Please feel free to phone, write, e-mail or even visit us at the Resource Centre in Lymm. Further information We have booklets and leaflets on Developmental Dysplasia of the Hip, Congenital Talipes Equinovarus (club foot) and Lower Limb Deficiencies, a regular magazine and equipment / aid lists. We also have a comprehensive library of information relating to conditions affecting lower limbs. Getting together Each year STEPS organises an annual event (There most recent one was a Ponseti method training clinic in Manchester, England http://www.steps-charity.org.uk/main/manchester.htm ) which not only reviews the current thinking on lower limb abnormalities but allows you to meet experts (such as Orthopaedic Consultants) in an informal setting and brings together families who share your experience. There are also groups and branches of STEPS throughout the country - we can let you know if there is one local to you. Donations We hope you find this Internet site useful. Please let us know what you think by contacting sue@.... If you want to support our work please make an online donation by going to and on 'search' type in steps and then choose National Association for Children with Lower Limb Abnormalities - STEPS and follow the instructions. The site is located at http://www.steps-charity.org.uk/index.html I think that it would be a great idea if we could figure out how to do something like STEPS. and (3-17-99) > > > > , > > > > Thanks for the info. I was aware from your previous posts about the > efforts > > of Dr. Pirani, but I did not know that there were so many more > developments. > > Sounds like things are moving along nicely... > > > > My proposal is to establish a foundation with the specific goal of > raising > > funds to support the works of doctors who are treating clubfoot > using the > > Ponseti method in developing countries. > > > > It would probably be a lot for one organization to raise funds and > > coordinate all of the medical aspects of this size project. > > > > Perhaps raising funds is what the parents/other supporters could do > to be of > > help to the doctors. We could work on setting up a permanent fund > which may > > at a later time be incorporated into this larger organization. It's > such a > > huge undertaking. It's hard to figure out how to help. > > > > Joanne W. mom to Zoe (3-25-01) right clubfoot > > > > > > > >Message: 4 > > > Date: Mon, 03 Feb 2003 00:24:24 -0000 > > > From: " Egbert <martinegbert@e...> " > > ><martinegbert@e...> > > >Subject: (unknown) > > > > > >Joanne, > > > > > >Yes, the effort to set up a group like that already exists. Dr. > > >Pirani (Vancouver) and Dr. Morcuende (Iowa) are working together to > > >try to establish an organization that can work as a clearinghouse > for > > >Ponseti method treatment projects to countries around the world. > Dr. > > >Pirani has put together a systematic approach of things that would > > >need to be done for a system in any country. Since he has now > worked > > >on implementing this in 4 different African countries, they have > > >worked out the " bugs " of the general program, training materials, > > >political issues, instructions for the local manufacture of a > simple > > >FAB/DBB system and other things important to making it work. But > for > > >each country things will be a bit different. > > > > > >One thing that is needed is a doctor who is willing to be > > >the " Champion " of the program in that country or region to lead the > > >program and also funding to cover the costs of setting it up and > > >following up on the program over a number of years to make sure it > > >becomes sustainable. I think that the costs of funding the 4 years > > >of the program in Uganda has been about $150,000 which included > > >surgical related equipment and supplies for the currently untreated > > >older children. The country of Uganda has incorporated the ongoing > > >costs into their system of health care and their medical school > > >training program. The initial funding of the Uganda Clubfoot > Project > > >came from the Rotary Club of Burnaby Vancouver, B.C. Canada and a > > >number of other donators including British Airways for > transportation > > >to and from Uganda. > > > > > >The U of Iowa has been working on different situations by going to > > >the political and medical systems in Nicaragua, Costa Rica and > > >Columbia to begin Ponseti method programs there. In those > countries, > > >there are already an existing pediatric orthopedic system in the > > >major cities, but not perhaps as much in poorer rural settings. > They > > >are hopeful that they can change the approach of the existing ped > > >orthos and medical school programs to institute the Ponseti method > as > > >their countries mainstream method and then expand the program to > the > > >rural clinic settings. > > > > > >I am aware of a group of doctors have a program called " Helping > Hands > > >to Haiti " . They deal with all kinds of medical issues and have > > >doctors with different specialties travel from the U.S. to Haiti to > > >help for short periods of time at their clinic. They found out > about > > >the Ponseti method and wanted to incorporate it into their clinic. > > >They contacted Dr. Pirani who had just coincidently met and had > begun > > >corresponding with a Haitian ped ortho at the 3rd International > > >Congress on Clubfoot in August 2002. It turns out that this > Haitian > > >ped ortho was already doing some things with the Helping Hands to > > >Haiti group. But they needed some help in setting up the system to > > >make the whole thing work and track the outcomes. I believe that > Dr. > > >Pirani and/or a Shriners doctor who uses the Ponseti method will be > > >going to Haiti in the next few months to help get their program > > >started. I believe that Haiti would have about 260 children with > > >clubfeet per year, all within about 100 miles of this clinic. > > > > > >When Dr. Pirani was at the 3rd International Congress on Clubfoot > in > > >August, there were a number of doctors from underdeveloped area's > of > > >the world who were very interested in the Ponseti method and the > > >Uganda Clubfoot program. But most of them had not yet used the > > >Ponseti method yet themselves, but realized the potential impacts > in > > >their own countries. I assume that Dr. Pirnai is corresponding > with > > >some of those doctors. > > > > > >Dr. Pirani also has doctors from major hospital groups who have > > >learned and use the Ponseti method who have asked him to help find > > >them a country that they can adopt and go help set up a Ponseti > > >method treatment program. > > > > > >You can see how a central organization to coordinate doctors, > > >countries, production of training materials, seeking and processing > > >charitable funding and grants, track results of the programs and > keep > > >the whole process organized would be very helpful. It is hoped > also > > >that there will be at least endorsement support from POSNA and the > > >World Health Organization. > > > > > >Hopefully our groups can be of help in some way in these efforts. > > > > > > and (3-17-99) > > > > > > > _________________________________________________________________ > > Add photos to your messages with MSN 8. 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