International Esophageal Atresia Team (I.E.A.T.)
The International Esophageal Atresia Team is made up of Parents of Esophageal Atresia Survivors who have children born with esophageal atresia and or tracheoesophageal fistula that started support groups in there own country and have joined together with other countries from around the world to offer information and support to families who are affected by esophageal atresia and tracheo-esophageal fistula and the VATER association which we now call CARROTS.
This is a list of support groups from countries throughout the world. If you are traveling to any of these countries please feel free to contact them and they may be able to find a family you can visit with and spend a night or two during your travels and make a lasting friendship. Some of the support groups may only have a phone number or e-mail address at this time but I can assure you that we are all trying to gather information and share it with you in the best way we can with the money available to us. Make a friend if you travel to one of these countries. One of the goals of IEAT is to have an exchange camp where families can go abroad with their child and visit with children and families who are just like you. At this time there is only one camp and that is with our IEAT of parents in Sweden and hopefully more to come in the near future.
Languages: Aussie English
Name of Group: Oesophageal Atresia Research Auxillary
Support Group since 1984- I came across them after my contact with Dr. Alex Auldist, Dr. Spencer Beasley and Dr. Nate Myers. I spoke with their past President Mrs. Woolrich years ago.
Address: P.O. Box 370,
Boron Victoria, 3155
Telephone # +61-39572-4469
Contact person is Rod Cole at phone number above
e-mail: Rod Cole – email@example.com
e-mail: John Graham – firstname.lastname@example.org
e-mail: Adam Clark – email@example.com
Name of Group: Tracheo-Oesophageal Fistula /VATER Network
Acronym: TOF/VATER (Looks a little familiar ay mate)
Address: Brisbane, Queensland
Telephone: Susan – 07-3359-0417
Telephone: Riborg- 0-07-3366-6417
Telephone: Lisa and Gavin- 07-3353-4935
Telephone: Noelene- 07-3821-0354
Email: Susan – firstname.lastname@example.org
e-mail: Riborg – email@example.com
Name of Group: Kreis fur Eltern von Kindern mit SpeiserohrenmiBbildungen
Acronym: KEKS (Austria) e.V.
Address: Auberg 13
A-4171 St. Peter
Languages: BritishEnglish, German
Name of Group: Kreis fur Eltern von Kindern mit SpeiserohrenmiBbildungen United Kingdom
Acronym: KEKS (U.K.)
Address: 42a, Westbourne Road
London N7 8AL
This is a new support group and they are part of the KEKS group from Germany. Started in 1998.
Name of Group: Tracheo-Oesophageal Fistula Support
Address: St. George’s Centre
91 Victoria Road
Telephone: +44 (0)-115-961-3092
Fax: +44 (0)-115-961-3097
Web site: www.tofs.org.uk
Support group since 1982. Fouded by Linda Morris. We met this group through a contact with one of our VATER families. May be the very first support group. Have conferences every 2 years and do an outstanding job with all the research and work they do for parents and families throughout the world. The Dobb’s family did an incredible amount of work to bring TOFS outstanding recognition along with all the volunteers and the results of everyone’s work is evident. Vicki Martin does their Web Page and has done a fantastic job with all the work and information available on their web site.
Name of Group: Kreis fur Eltern Kindern mit SpeiserohrenmiBbildungen
Acronym: KEKS e.V.
Address: Sommerrainstrauss 61
Web site in German: www.keks.org or http://members.aol.com/keksev
Support Group since 1983. In my opinion and for what it is worth this is the finest group in the world. They have reached out across the European continent and have helped families in war torn countries and brought the families and their baby born with oesophagaeal atresia and or tracheo-oesophageal fistula and other anomalies to Germany and cared for them in the KEKS Houses. Most if not all surgeries were done by a wonderful Surgeon by the name of Professor Lewis Spitz in England. They help finance the transportation from the families own country to Germany and to England for surgery at The Great Ormond Street Children’s Hospital, The first Children’s Hospital in the world. I met the Professor some years back when he came to the Children’s Hospital National Medical Center in Washington D.C.. I was invited by our surgeon Dr. Kurt Newman who called me and said that the hospital pediatric surgery board was having a conference on babies born with esophageal atresia and that Dr. Spitz would be speaking on esophageal atresia and would I like to attend.
I got to speak with Mr. Spitz for an hour and discussed with him our meeting with Enyd Michel, Uhli Speer and their journalist Dirk from the German group when they had come over to visit us and to come to our first support group meeting and begin our talk on an International group, and the genetic research at the National Institutes of Health. We talked about his experience and why he prefers the operation he does for esophageal replacement, long term effect and a host of other things. I will never forget him saying to me when we were talking about Enyd and all of the babies she brings to him for operations: he said! she thinks I walk on water and one of these days she’s going to see all the leaks in my boots. I can’t say enough about them.
I asked if he would join our medical board and took some pictures. The residents kept interrupting us in the doctors library saying we have to speak with him and the professor finally gave in. He was quite the Gentleman.
Enyd Michel was Chairman of KEKS for years and has a daughter with oesophageal atresia and tracheo-oesophageal fistula and radial birth defect. Uli Speers was the treasurer who has a son with oesophageal atresia and tracheo-oesophageal fistula. Uli is now Chairman of the KEKS group. To share with you the outstanding work that the KEKS group has done over the years Enyd was awarded the Order of Merit of the Federal Republic of Germany and to top that off Enyd received a letter from BUCKINGHAM PALACE giving her permission to wear this award in her native homeland Britain. In Enyds words she said to me; I couldn’t believe my eyes when I opened it. The KEKS homes have a garden outside with rosebushes planted in memory of babies who have died with their names on plaques and they just continue to do so many wonderful things. Before meeting Enyd I had plans for our group and what I would like for us to do and seeing what Enyd had done it was like she was reading my mind. The only difference was she had already done it. Now what we need is a radio show and a TV telethon. They continue to bring families to England for surgery and after their stay in the hospital bring them back to the KEKS houses and teach the parents how to feed and care for their baby. This is only a small amount of information about this wonderful support group.
Name of Group: Vereniging van Ouders van Kinder met een Sloksarmafsluiting- In English: (Association of Parents of Children with tracheooesophageal fistula and or oesophageal atresia.TOF?OA)
Newsletter called: nieuwsbrief and their mascot is an elephant
Address: Stoop van
3331 GV Zwijndrecht, Holland
Contact: Dicky Poot-Boorsboom
Contact: Mariet Somers-Prinsen
Website: www.voks.nl (is in Dutch Language)
Started in 1992 I remember writing many letters to the Vice President of VOKS Niels Heikens back in 1995 asking if the parents in Holland would be interested in being part of the genetic research that Les Biesecker had offered to do. I will never forget a story he shared with me about having to buy a specific rocking horse for his baby who had TOFS. He heard about it from another parent and after their baby would eat they would put the baby on this rocking horse and the baby would rock back and fourth and this prevented reflux. I remember how Niels said it had to be only this one horse and he bought one for his child and swore that it worked. What fond memories. The first attempt of forming an International Esophageal Atresia Team was back in 1997 and Karin Brinksman represented Holland. Terri represented the United States and Linda Morris represented England. The meeting was held at the KEKS House in Stuttgart and Enyd, Karin, Linda and Terri shared ideas and came home with many notes.
Name of Group: none available
Address: 48 Hazelwood Avenue,
Contact: Jennifer Lawton
Name of Group: Esofagus Gruppen’
19453 s Upplands Vasby
Started in 1993. Has a camp for kids and their family and to my knowledge is the only one in the world. Another step in the right direction and the possible beginning of an International Esophageal Atresia Team exchange camp for families. I have been friends with Marie for about 6 years and I was hoping my son would get to meet Marie and her family when he went to Sweden to Play soccer in the Gothia Cup. She has a son born with TEF. They are doing an outstanding job with their camp and work with families and support in Sweden and other countries.
Name of Group: Kreis fur Eltern von Kindern mit SpeiserohrenmiBbildungen e.V Switzerland
Address: Im Egg 98
Contact: Evelyn Siebenpfun
The Vater Connection
Started in 1997 by Angie Schrieber who has a daughter with VATER and Nancy McCarley who has a son with VATER. They are both very knowledgeable about VATER and have a lot to share. Nancy lives in Mississippi and Angie in Kansas.
Address: 1722 Yucca lane
Emporia, Kansas 66801
Contact : Angie Schrieber
EA/TEF Family Support Connection Inc.
Started in 1992 by a group of families from Illinois. They have a lot of information to share and have a yearly dinner.
Address: 111 West Jackson Boulevard
Chicago , Illinois 60604