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| Name: | Naz |
| City: | Rotterdam |
| State: | NL |
| Country: | Nl |
| E-mail address: | nasrat_ronaldo@hotmail.com |
| Comments: | Hi people,
I am a student and I am trying to write a short report about FOP disease, I was wondering if anyone knew where i could find information about the effectiveness of corticosteroids against the symptoms of FOP disease. graphs of pictures would be really helpful, please email me if you know. regards Naz |
| Name: | phil toth |
| City: | penrith |
| State: | nsw |
| Country: | australia |
| E-mail address: | pjt961@bigpond.com |
| Comments: | Hi there, it would great if the doctors could find a drug to stop the progress for this dreaded disease.We have a little guy called zac in the penrith area that could really use your help.me and my partner met him and his mum yesterday, hes a lovelly little fellow .please keep up your research to help all the people who have F O P
BEST REGARDS PHIL TOTH |
| Name: | HAKIMA NORDSTRÖM |
| City: | SOLNA |
| State: | Stockholm |
| Country: | SVERIGE |
| E-mail address: | hakimanordstrom@hotmail.com |
| Comments: | Hi,
My name is Hakima Nordström,are 34 years old,Therre is any mom with fop,I have sam question to ask,please mail me.thank you. Love , Hakima |
| Name: | Tiana Ramirez |
| Comments: | I recently studied this for a project and this just is such a horrible disease and for anyone to have to deal with this is just sad! I will pray for all of you! |
| Name: | DANIELLE |
| City: | BRIMINGHAM/HOOVER |
| State: | ALABAMA |
| Country: | US |
| E-mail address: | pretty-yung-thang09@hotmail.com |
| Comments: | MY NAME IS ANNIE BUT I GO BY DANIELLE.IM 17 ALMOST 18 IN 8 MONTHS.I WAS A ACTIVE AND HYPER YOUNG LIL GIRL AND IM STILL AM BUT YES I DO HAVE FOP[SINCE I WAS 3 YRS OLD.]I JUS WANNA TALK TO OTHER PEOPLE THAT HAVE IT.ITS PRETTY MUCH TAKING OVER MY WHOLE BODY NOW..BUT THATS NOT STOPPING ME FROM BEING A TEENAGE..EVEN THO I CANT DO EVERYTHING I USED TO DO WHEN I WAS YOUNGER..OH AND I TRY TO STAY POSITIVE BUT SOMETIMES ITS JUST TO HARD FOR ME...BUT I NEVER GIVE UP...ITS ALL IN GODS HANDS NOW |
| Name: | pawel legosz MD |
| City: | warsaw |
| Country: | poland |
| E-mail address: | p.legosz@gmail.com |
| Name: | marian granaghan |
| City: | london |
| Country: | united kingdom |
| E-mail address: | mgranaghan@hotmail.com |
| Comments: | My daugther Seanie aged 12 was diagnosed with FOP in September 2008 it has totally devastated us and we are trying to come to terms with it. Seanie herself is very positive she has a very happy nature and loves nothing more than hanging out with her mates. Her left side has been effected and she now has a swelling down her right arm so we are praying that it wont go the same way as her left side. I would like to be in contact with other parents who have to deal with this heartbreaking condition. |
| Name: | Samantha Salie |
| City: | Londonderry |
| State: | New Hampshire |
| Country: | U.S.A |
| E-mail address: | Samantha_salie@yahoo.com |
| Comments: | Hello guys, im 15 years old, and im almost 16 on march 28th im in an electric wheel chair, I can't walk any more i was 11 when my legs locked up in a sitting postion im a godmother of a lil baby girl, shes 1/2 she walks and shes my lil baby girl and my lil princess and i have 2 nephews they are 5 and 2 there name is andrew 5, christpher 2.
Love ya, Samantha Salie |
| Name: | Manuel de Jesús González G. |
| City: | Villa Corzo, Chiapas |
| State: | Chiapas |
| Country: | México |
| E-mail address: | manuel_glez@prodigy.net.mx |
| Comments: | Es altamente motivante su lucha en contra de esta enfermedad, elevaré siempre mis oraciones para que las bendiciones del TodoPoderoso siempre los acompañen.
Que Dios los bendiga!!!! |
| Name: | Hassan |
| City: | Delhi |
| E-mail address: | hassan2279@yahoo.co.in |
| Comments: | Hello everybody, this is Hassan & am 28 years old FOP patient from India. Anybody who wanna talk or share something are most welcome. |
| Name: | nini |
| City: | tbilisi |
| Country: | georgia |
| E-mail address: | siradzeino@yahoo.com |
| Comments: | i whant it |
| Name: | nini |
| City: | tbilisi |
| Country: | georgia |
| E-mail address: | siradzeino@yahoo.com |
| Comments: | i whant it |
| Name: | Mary Ann Craige |
| City: | fredericksburg |
| State: | VA |
| Country: | USA |
| E-mail address: | macraige@hotmail.com |
| Comments: | Lovely cover. |
| Name: | Fay |
| City: | New York |
| E-mail address: | fay@yahoo.com.br |
| Comments: | Sup, tite hp you got there. Keep up da work. Sweet job! Aight, peace out. pin worm ... metformin recipe ... is ill!!! |
| Name: | CJ Jeffries |
| City: | Phoenix |
| State: | MD |
| Country: | USA |
| E-mail address: | Jeffries@kennedykrieger.org |
| Comments: | My friend in Lancaster, PA has been dx with FibroDysplasia.
I am desperate to find some help for her. She has it in every part of her body. She is going to Hershey Medical Center on Monday for an consultation and evaluation. She is my dear dear friend and I love her very much. Please find a cure for it. |
| Name: | Michele Smith |
| City: | Glen Burnie |
| State: | MD |
| Country: | USA |
| E-mail address: | micvalentine@hotmail.com |
| Comments: | We live in a wonderful neighborhood and one of your neighbor's son has FOP. Waynie is such a sweet little boy, and he has the best big brother who really looks out for him. The other kids in the neighborhood who know Waynie, are aware of his condition and they too do what they can to help make sure that he plays safe and they do what they can to keep him out of harms way. They did a wonderful fund-raiser Saturday and the turn out was huge. Money from these will go to more research and testing and hopefully one day they will be able to find a way to prevent it or cure it once someone has been diagnosed with it.
Our neighbors and friends will always come together to help another neighbor or friend. We will always offer what ever support we can. |
| Name: | Luis Cedeno |
| City: | Valencia |
| Country: | Venezuela |
| E-mail address: | luisjcede@hotmail.com |
| Comments: | Hola !! Mi hermano menor fue diagnosticado con FOP desde los 10 años de edad. Es un joven formidable. Pese a sus limitaciones físicas, lleva una vida normal y productiva. Hace unos días sufrío una caída y se fracturó el hombre derecho. Esto le ha causado mucho dolor y no sabemos si es conveniente inmovilizar su brazo. Estamos muy preocupados de que pierda movilidad en ese brazo, ya que es su mejor brazo. Agradecería cualquier consejo o ayuda. Saludos |
| Name: | Ahmad Obaidus Sattar Bhuiya |
| City: | Dhaka |
| Country: | Bangladesh |
| E-mail address: | aosattar@gmail.com |
| Comments: | Hi every body
My son Khaled-bin-Obaid is diagnosed with FOP when he was 3. At that time I was very disappointed because doctors told me that they do not have any treatment. So I turned for alternative medicine. I taught myself Homeopathy. Since then my son is under Homeopathy treatment under me with amazing results. As my son become member of IFOPA we receive letters of misery around the world. As the only goal for IFOPA is to share so I raise my voice to treat FOP with Homeopathy. But each time I feel ready resistance for Homeopathy. But it is a very wonderful and inexpensive effective way for treatment. So FOP community should give proper attention to it. Ahmad Obaidus Sattar Bhuya father of Khaled-bin-Obaid dx@3 now 10 |
| Name: | Jennine |
| City: | Dayton |
| State: | OH |
| Country: | USA |
| E-mail address: | Boogiesmommy05@sbcglobal.net |
| Comments: | I first heard about FOP on a documentary but I think I saw it on TLC. The past few years I have thought about it several times but I could never remember what it was called. I finally got a chance to do a research project (I am in nursing school) and I jumped on the opportunity to learn more about FOP. I have written down some of your email addresses (if you stil check the website) and I will hopefully be contacting you. I would love to speak to the individuals that have been diagnosed with FOP and possibly some of you whose children or relatives have it. I know many people have said this before and I hope this doesn't come across in a creud way but FOP fascinates me. It is such a horrible thing to see and I can't imagine what going through it must be like but it is truely a fascinating disease in the perspective that something like it actually exists. I hope you understand my reasoning I don't mean it to sound like it is a good thing because I know it isn't. I would also like to know more about the fundraising events and hope to be a part of the research of FOP when I am working in the medical field. |
| Name: | NORA |
| City: | GARCIA |
| State: | CA |
| Country: | USA |
| E-mail address: | lenora.garcia@comcast.net |
| Comments: | What a great website. My great newphew has this and this website has given me so much inforamtion.
Thank you |
| Name: | Celia Leib |
| City: | Rockledge |
| State: | Fl |
| Country: | United States |
| E-mail address: | foreverrelying@yahoo.com |
| Comments: | The youth book was very educational. I learned about FOP from a family member of Daniel Licht. I needed a topic for a persuasive speech for school,I will be persuading people to give to the research of FOP. |
| Name: | ROBERTO BRUM GONÇALVES |
| City: | LAGES |
| State: | SANTA CATARINA |
| Country: | BRASIL |
| E-mail address: | rbrumgon@hotmail.com |
| Comments: | Olá!Não falo inglês.Mas por ter uma amiguinha portadora da
FOP decidi conhecer mais sobre esta doença,pois,pretendo ajuda-lá como for possivel.Toda informação que se adquire ajuda as pessoas a ter uma melhor qualidade de vida. |
| Name: | kelly sanderson |
| City: | Hartlepool |
| State: | England |
| E-mail address: | kelly.sanderson2@ntlworld.com |
| Comments: | Hi,trying to get in touch with other people with FOP.My daughter has just been diagnosed she is 20 months old,help. |
| Name: | cathy erasmus |
| City: | bethal |
| State: | mpumalanga |
| Country: | south africa |
| E-mail address: | cathy.s.m@absamail.co.za |
| Comments: | my 10 year old son (Riaan)was recently diqagnosed with FOP and we can really use some help! |
| Name: | filiz atacan |
| City: | kocaeli |
| State: | izmit |
| Country: | türkei |
| E-mail address: | fatacan68@gmail.com |
| Comments: | ich bin eine 40 jaerige lehrerin.mein freund ahmet ist ein FOP-erkrankter,er ist 35 jahre alt.er studiert.ahmet hat ein hartes leben.er kann sich nicht bücken,nicht auf einen stuhl setzen.alles bei ihm ist eibgeschrenkt.11 wurde er operiert,umsonst.der arzt wusste nicht alles über FOP.er sagte es ist kongenital myositis ossifikans....
ich und ahmet,wir haben vor zu heiraten.kann ich durch künstliche befruchtung ein gesundes kind bekommen?FOP ist genetisch,50 prozent chance für ein gesundes kind????? bitte helfen sie uns bevor es zu spaet ist. filiz atacan(geb. in hannover,grüsse alle die heute hier sind!!!!) |
| Name: | Kaylee Fenton |
| City: | East Grand Forks |
| State: | Minnesota |
| Country: | USA |
| E-mail address: | fenton_07@hotmail.com |
| Comments: | I was wondering if anyone knows i can get in touch with the company that has help dogs? i i know 2 people had them in florida and i was wondering if anyone had any information?? if they do they can email me and i would really appreciate it. i would also like to add that anyone can add me on msn and i am 19 years old
thanks so much Kaylee |
| Name: | Doreen Upjohn |
| City: | hartlepool |
| State: | cleveland |
| Country: | Great Britian |
| E-mail address: | terence.upjohn@ntlworld.com |
| Comments: | My grandaughter has been diagnosed with FOP she is only 19 months old.
I understand how rare it is and this information is of great help to understand. hope a cure can be found i.e. the article abouts the gene in sharks - how do we keep updated in treatment when and if it becomes available. |
| Name: | Tre Robson |
| City: | AKL |
| State: | NTHLND |
| Country: | NEW ZEALAND |
| E-mail address: | tre408@hotmail.com |
| Comments: | KIAORA!!!-Hello in New Zealand Maori that is!This is a big shout out to Luciana(hope i spelt it right) and her Mum!!!Just saw you on the t.v here in N.Z on your documentary - The girlwhose bones are turning into muscle - much respect for you darling and your love for life - also to your Mum - you are a very dedicated mother and I hope you have many happy years together...Tre. |
| Name: | Sharon Zeni |
| City: | Santa Rosa |
| State: | California |
| Country: | United States |
| E-mail address: | neco_ji@hotmail.com |
| Comments: | I just started getting interested in FOP when a friend brought it to my attention through some images. I offered to hold a table at a local schools science fair, about bones and fossils, remembered FOP, and decided to include that in my project. Despite it being such a grim disorder, I am having fun researching it and thinking up ways to make people aware of FOP; If I can get permission, I'll even set out a jar to collect donations.
One hopes that that cure can be found soon enough to help the children and young people I read about. |
| Name: | Yerce Rivas |
| City: | Lima |
| Country: | Peru |
| E-mail address: | yerrivas@hotmail.com |
| Comments: | Hola Sarah:
Mi esposo y yo hemos visto y leido un poco de tu vida y estamos muy admirados por tu fortaleza y tu fe. Queremos agradecerte por tu ejemplo en nuestras vidas. Nosotros somos miembros de la iglesia de Jesucristo de los Santos de los ultimos dias, nos llaman: "mormones" y queremos invitarte a que conozcas nuestra iglesia. Existen misioneros por todo el mundo enseñando el evangelio de Jesucristo y que estarian encantados de enseñarte a ti y a tu familia sobre todo porque sabemos que tu espiritu es increible, "de los grandes y nobles que han llegado a la tierra". Esperamos que puedas leer esto y podamos saber de ti. con amor, Familia Colan: Ludwig y Yerce www.lds.org www.mormon.org |
| Name: | Ahmad Obaidus Sattar Bhuiya |
| City: | Dhaka |
| Country: | Bangladesh |
| E-mail address: | aosattar@gmail.com |
| Comments: | My Son Khaled - Bin - Obaid is diagnosed as FOP. I was very helpless at that time as tere is no medication. Then I sarted to learn Homeopathy and treat my son. Results are amaizing!! So FOPs do not be disapointed and dream to live a healthy life with Homeopaty treatment. |
| Name: | July |
| Country: | Brazil |
| E-mail address: | jufreitas5@itelefonica.com.br |
| Comments: | Si alguna persona , tiene hablado com Robin Rice...por favor me dime, por e-mail...
Thank' s !!! |
| Name: | Melissa Druckenmiller |
| City: | Levittown |
| State: | Pennsylvania |
| Country: | USA |
| E-mail address: | MDINPA25@HOTMAIL.COM |
| Comments: | I would just like to say thanks for living your life to the fullest! I look up to all of you. Thank you for sharing your information and pictures on this site. |
| Name: | Valeria |
| City: | mendoza |
| State: | mendoza |
| Country: | Argentina |
| E-mail address: | Vgonzalez80@gmail.com |
| Name: | Cindi Walker |
| City: | Terrell |
| State: | TX |
| Country: | USA |
| E-mail address: | doublespurranch@yahoo.com |
| Comments: | My cousin, Jeannie Peeper, has a FOP. I am so proud of her and all that she does to help find a cure. |
| Name: | Ryan Moore |
| City: | Lasalle |
| State: | Ontario |
| Country: | Canada |
| E-mail address: | herbie-86@hotmail.com |
| Comments: | lm hoping and praying for a cure real soon |
| Name: | Ryan Moore |
| City: | Lasalle |
| State: | Ontario |
| Country: | Canada |
| E-mail address: | herbie-86@hotmail.com |
| Name: | Lucy |
| City: | Smithtown |
| State: | New York |
| Country: | USA |
| E-mail address: | lulu_salerno@yahoo.com |
| Comments: | My beautiful 6 year old nephew has FOP and I wanted to learn more about it. |
| Name: | Krystal Penn |
| City: | Manchester |
| Country: | UK |
| E-mail address: | krystal.penn@hotmail.com |
| Comments: | I Just came accross this site, www.freebieSMS.co.uk , and it seems to offer free SMS messages, for the UK at least, has anyone ever used them? |
| Name: | Kim McIntyre |
| City: | Mount Pleasant |
| State: | MI |
| Country: | USA |
| E-mail address: | kimberleigh_hunt@hotmail.com |
| Comments: | I will be getting this book for my nephew. His name is Cody and he will be 12 this year. He was diaganosed with FOP as a baby. He can still walk but only a short distance and needs his electronic chair to get him around. He is an awesome kid who is so giving and caring and I want him to have a copy of this book so he can learn more and know that he is not alone. |
| Name: | David Ruiz |
| City: | Caguas |
| State: | PR |
| E-mail address: | Vivian_v77@hotmail.com |
| Comments: | gracias por la fundación que ustedes tienen para ayudar a estas personas que Dios los continue ayudando . Bendiciones para todos . |
| Name: | David Ruiz |
| City: | Caguas |
| State: | PR |
| Country: | PR |
| E-mail address: | Vivian_v77@hotmail.com |
| Comments: | Hola Nos gustaria nos enviaran el liubro de informacion que se menciona ya que como padres tenemos una niña con una condicion similar y la hemos llevado a muchos medicos y no saben nada , no conocen del caso yella sufre demasiado, su condicion es an ambas caderas y se deforma poco a poco ya no puede realizar losque antes realizaba. sufre de mucho dolor y el diagnostico es calsificacionesen sus caderas. Vimos las fotos que ustedes muestran y nos gustaria que nos dieran mas informacion.Amamos mucho su organizacion ya es parte de nosotros,Dios les bendiga siempre. |
| Name: | David Ruiz |
| City: | Caguas |
| State: | PR |
| Country: | PR |
| E-mail address: | Vivian_v77@hotmail.com |
| Comments: | Hola Nos gustaria nos enviaran el liubro de informacion que se menciona ya que como padres tenemos una niña con una condicion similar y la hemos llevado a muchos medicos y no saben nada , no conocen del caso yella sufre demasiado, su condicion es an ambas caderas y se deforma poco a poco ya no puede realizar losque antes realizaba. sufre de mucho dolor y el diagnostico es calsificacionesen sus caderas. Vimos las fotos que ustedes muestran y nos gustaria que nos dieran mas informacion.Amamos mucho su organizacion ya es parte de nosotros,Dios les bendiga siempre. |
| Name: | David Ruiz |
| City: | Caguas |
| State: | PR 00727 |
| Country: | Parque Del Condado# 2J-27 Urb Bairoa Park |
| E-mail address: | Vivian_v77@hotmail.com |
| Comments: | Hola Nos gustaria nos enviaran el liubro de informacion que se menciona ya que como padres tenemos una niña con una condicion similar y la hemos llevado a muchos medicos y no saben nada , no conocen del caso yella sufre demasiado, su condicion es an ambas caderas y se deforma poco a poco ya no puede realizar losque antes realizaba. sufre de mucho dolor y el diagnostico es calsificacionesen sus caderas. Vimos las fotos que ustedes muestran y nos gustaria que nos dieran mas informacion.Amamos mucho su organizacion ya es parte de nosotros,Dios les bendiga siempre. |
| Name: | Carmel Kehoe |
| City: | Liverpool |
| State: | Merseyside |
| Country: | UK |
| E-mail address: | carmel.kehoe@yahoo.co.uk |
| Comments: | Hi,
I think what you do is amazing. I have only just discovered that a genetic condition such as FOP can exist and find it facinating. I hope you find a cure sometime soon. from Carmel. |
| Name: | Alejandro Velasco |
| City: | México |
| Country: | México |
| E-mail address: | icaro_25_27@hotmail.com |
| Comments: |
MI NOMBRE ES ALEJANDRO VELASCO, VIVO EN LA CIUDAD DE MEXICO Y TENGO 32 AÑOS. MI FAMILIA Y YO LAMENTAMOS MUCHO LA MUERTE DE MARGIE Y ENVIAMOS UN ABRAZO CON CARIÑO PARA TODA SU FAMILIA Y TODAS LAS PERSONAS QUE ESTABAN CERCA DE ELLA. DESCANSE EN PAZ EN EL CIELO JUNTO A DIOS. |
| Name: | Kaelyn Buurman |
| City: | Bremerton |
| State: | WA |
| Country: | USA |
| E-mail address: | rkbuurman@yahoo.com |
| Comments: | Before today I had never heard of FOP, but I was watching an episode of "Color Splash" on the Home and Garden Channel and there was a little boy that they were decorating a room for who had FOP. Being intrigued with this new discovery, I decided to "google" it and came across your website. I was so impressed with how this site was laid out and I learned so much! Seeing your guestbook, I knew I just had to let you know how great this website is and how I can definitely see what a wonderful tool it would be for families dealing with this disease. I intend on let my friends and family know about this disease and website and hopefully this will help educate the world on this "not-so-familiar illness and make it not so "scary." |
| Name: | R Brian Kinghorn |
| City: | Hexham |
| State: | Nothumberland |
| Country: | England |
| E-mail address: | robert_brian.kinghorn@virgin.net |
| Comments: | Wishing everybody connected with FOP a very merry christmas and a happy new year |
| Name: | Brooke |
| City: | Douglasville |
| State: | GA |
| Country: | United States |
| Comments: | OMG I feel bad for them. I want to help them. There are so many diseases I wish I could help, but I can't do them all. I can pray for them all though. |
| Name: | Brooke |
| City: | Douglasville |
| State: | GA |
| Country: | United States |
| Comments: | OMG I feel bad for them. I want to help them. There are so many diseases I wish I could help, but I can't do them all. I can pray for them all though. |
| Name: | Shoshanah |
| City: | Brooklyn |
| State: | NY |
| Country: | USA |
| E-mail address: | shanah934@aol.com |
| Comments: | I would like to say to every suffering with FOP that they are all amazing people. I real a lot about people suffering with it and how much they accomplished with their lives. I am amazed by these stories and I hope that some day a cure will be found. |
| Name: | Laurie |
| City: | Adrian |
| State: | MO |
| Country: | USA |
| E-mail address: | laaimp00@hotmail.com |
| Comments: | God bless you all. My prayers that soon a treatment will be found. I learned this through research for a paper for advanced Anatomy and Physiology to complete my BSN. Again, bless you and my prayers. |
| Name: | MAGA MUMU MUMU |
| City: | MUMU TOWN |
| State: | NIO |
| Country: | NAIJA |
| E-mail address: | mumu@mumu.com |
| Comments: | I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O I DON LAND O O O UMU GUYS O O KEEP OFF O O O V |
| Name: | Rachel81 |
| City: | London |
| Country: | UK |
| Comments: | Have any of you guys ever heard of www.FreebieSMS.co.uk ? It seems to send free SMS messages in the UK, but does anyone have any experience with them? |
| Name: | LYDIA |
| City: | PHOENIX |
| State: | ARIZONA |
| Country: | USA |
| E-mail address: | nanalydia@aol.com |
| Comments: | my 17 year old daughter yezenia was born with fop,but it didnt come out till she was 3yrs old.back then there was not very much information on fop like there is now,her doctors didnt know how or what to do.but thru the years we have faced this awful disease the best way we can.all we can do is take one day at a time. |
| Name: | Jessica |
| State: | New York |
| Country: | USA |
| E-mail address: | jb65455p@pace.edu |
| Comments: | Hey! My name is Jessica and I have FOP. I'm 21 years old and I'm a junior in college. Every though having FOP has made my life hard, it has made me the person I am. Despite having FOP, I try to stay positive and live one day at a time. If anyone ever needs to talk, Im here. |
| Name: | Jonathan Nilsson |
| City: | ludvika |
| Country: | Sweden |
| E-mail address: | jonte-820@hotmail.com |
| Comments: | I myself have FOP, I am (at te time of writing this) 19 years old, and my reason for writing this is to make contact with just about anyone who has, or know someone who has FOP.
to talk about our personal experiences, medicines, maybe ask questions, and of course we could talk about just about anything else too.. I live in Sweden, in a town called Ludvika. my name (as seen above) is Jonathan Nilsson, and my e-mail / hotmail is: Jonte-820@hotmail.com feel free to drop a mail or add me on msn. |
| Name: | Danica Wells |
| Country: | Canada |
| Comments: | I'm in 9th grade and I've decided to do my "Maladie Orpheline" project on FOP. I hope it'll help raise awareness of FOP. |
| Name: | karl trau arnoux |
| City: | tegucigalpita |
| State: | omoa |
| Country: | honnduras |
| Comments: | hola, me llamo karl , tengo 55 años , estoy casado desde hace 29 años con maria elena, y tengo tres , hijos , carlos herman de 24 años , cornelia maria de 22 años ,,ella se acaba de graduar es abogado,,,y klaus berhard de 18 años ,empeze a desarollar f.o.p. alos 17 años
pero fui mal diagnosticado y se me sometio a cirujia ....a los 27 años sufri un grave accidente ,me cayo un arbol ,ordeñando a una vaca y me traumatize en varias partes de mi cuerpo sobre todo en mis articulaciones y espalda , ahora estoy inmobolicizado en un 100 %,MIS PADRES YA FALLECIERON ,, PERO MI FAMILIA CUIDA DE MI ,, |
| Name: | Hassan |
| State: | New Delhi |
| Country: | India |
| E-mail address: | hassan2279@yahoo.co.in |
| Comments: | Hello everybody, this is Hassan & am 27 years old FOP patient from India. Anybody who wanna talk or share something are most welcome. |
| Name: | Heidi |
| City: | Stanton |
| State: | Ne |
| Country: | USA |
| E-mail address: | lucky7_seniors_2005@yahoo.com |
| Comments: | What really scares me, besides someone actually suffering from FOP, is the fact that so few people know about it. I didn't even have the slightest clue that this was real until i watched a medical mysteries show on ABC. More people need to know!!!!
FYI.............. A common sign of FOP are the deformed big toes. They may look crooked and are shorter than the rest of the toes. |
| Name: | Linda Chandler |
| City: | Pittsburgh |
| State: | Pennsylvania |
| Country: | United States |
| E-mail address: | chandlerls@upmc.edu |
| Comments: | DEAR LUCIANA:
I WATCHED THE PROGRAM ON THE DISCOVERY CHANNEL AND WAS SO MOVED WITH THE RELATIONSHIP YOU HAVE WITH YOUR MOTHER. HOW LUCKY YOU BOTH ARE TO HAVE EACH OTHER. I FELT A BOND WITH YOUR FAMILY AS I WATCHED YOU ON VACATIONS AND JUST SPENDING SPECIAL TIME WITH EACH OTHER. I FEEL SUCH LOVE FOR YOU, I HAVE CHILDREN WHOM I LOVE DEARLY, I WOULD HOPE THAT IF MY CHILDRENS NEEDS WERE SUCH THEY NEEDED ME MORE AND MORE THAT I COULD BE LIKE YOUR MOTHER. PLEASE KNOW I DO THINK OF YOU AND WISH AND HOPE FOR THE BEST ALWAYS. |
| Name: | Marcos Coronado |
| City: | Maturín |
| State: | Monaga |
| Country: | Venezuela |
| E-mail address: | marcos.coronado@gmail.com |
| Comments: | Last Night I saw a program on Dicovery Chanel about this type desease and it really called my atention, I have never seen anything like that. |
| Name: | Kaylee Fenton |
| City: | East Grand Forks |
| State: | Minnesota |
| Country: | USA |
| E-mail address: | fenton_07@hotmail.com |
| Comments: | HI!!
my name is kaylee and i have had f.o.p. since i was 3 and im 18 now. if anyone wants to talk or ask me about my condition they can add me. loves Kaylee |
| Name: | kaylee fenton |
| City: | east grand forks |
| State: | minnesota |
| Country: | usa |
| E-mail address: | fenton_07@hotmail.com |
| Comments: | HEY everyone i have fop and im 18 years old. i graduated from high school this past may and my parents were astonished because they were told i would not live that long. they said i would not live past the age of 6 and i wanted to let everyone know im going to college this fall and anyone can e-mail me or add me on msn |
| Name: | Claudia |
| City: | Everett |
| State: | Massachusetts |
| Country: | Boston |
| E-mail address: | claudia_whittierschool123196@hotmail.com |
| Comments: | I know FOP can be scary for children like me but the thing is do´t be scared the doctors are here to help you.
I feel what other children with FOP feel and sometimes I feel that other normal children give me weird looks. |
| Name: | doða |
| City: | ýzmýr |
| State: | ege |
| Country: | turkey |
| E-mail address: | eraytuven@mynet.com.tr |
| Comments: | hi
my names doða I send my pýcture to you |
| Name: | JulianaFreitas |
| Country: | Brasil |
| E-mail address: | jufreitas5@itelefonica.com.br |
| Comments: | Hola...nesecito de ayuda,quiero mucho saber si alguna persona que conoce Robin L Rice de Porterville -Califórnia, pues él tiene FOP y esta enfermo y yo estoy sin noticias de él ...hace más de 2 semanas.
mi e-mail es jufreitas5@itelefonica.com.br Mi teléfono 00**55-13-3467-4670 ( Brasil) Gracias !!! |
| Name: | jack james |
| City: | johannesburg |
| State: | gauteng |
| Country: | south africa |
| E-mail address: | jacjams@yahoo.com |
| Comments: | really nice to see someone is doing for us all |
| Name: | Karen Lyons |
| City: | London |
| State: | Ontario |
| Country: | Canada |
| E-mail address: | karenlyons@sympatico.ca |
| Comments: | The number of children with this disease is small.....however, their hearts are big.
What can we do? PLEASE HELP!!!!!! |
| Name: | Vanessa Pereira Brito Borges |
| City: | São Sebastião |
| State: | DF |
| Country: | Brasil |
| E-mail address: | vanessahtinha_9@hotmail.com |
| Comments: | i'm searching for FOP and i liked to have founded websites talking about this terrbible disease ... congratulations for you , for this beautiful work ... you're helping searcher and people with FOP ...
kisses Vanessa ps.: sorry for any error in my comment ... ^^ |
| Name: | Harry Townsend |
| City: | Baltimore |
| State: | MD |
| Country: | USA |
| E-mail address: | itisup2me@excite.com |
| Comments: | I just heard about FOP. You are in my prayers that God will do something about this terrible disease.
I would like to share an 8 minute message that might help - 1.212.990.7002 and the Tim Morris story - 1.641.985.5999 ext. 26278 or //tinyurl.com/35max4 (8 minutes) and this is a recorded call (about 60 minutes //tinyurl.com/383huf GOD BLESS YOU! (Wed. 9pm, Sat. 1pm, EST, 1.212.990.8000 pin 3024#) Knowledge Is Power! PAYING IT FORWARD! |
| Name: | Nat Chester |
| City: | Alexandria |
| State: | Virginia |
| Country: | USA |
| E-mail address: | natchester@gmail.com |
| Comments: | Hi everyone. I'm a 10th Grader and I'm doing my Biology paper on FOP. IFOPA has been an invaluable resource in my research, and my heart goes out to all those with FOP. I admire your courage to cope the condition. I'd also like to thank Dr. Kaplan for helping to spread the word about FOP and for his and his colleague's dedicated research that led to the discovery of the FOP gene. |
| Name: | Nat Chester |
| City: | Alexandria |
| State: | Virginia |
| Country: | USA |
| Comments: | Hi everyone. I'm a 10th Grader and I'm doing my Biology paper on FOP. IFOPA has been an invaluable resource in my research, and my heart goes out to all those with FOP. I admire your courage to cope the condition. I'd also like to thank Dr. Kaplan for helping to spread the word about FOP and for his and his colleague's dedicated research that led to the discovery of the FOP gene. |
| Name: | Nat Chester |
| City: | Alexandria |
| State: | Virginia |
| Country: | USA |
| Comments: | Hi everyone. I'm a 10th Grader and I'm doing my Biology paper on FOP. IFOPA has been an invaluable resource in my research, and my heart goes out to all those with FOP. I admire your courage to cope the condition. I'd also like to thank Dr. Kaplan for helping to spread the word about FOP and for his and his colleague's dedicated research that led to the discovery of the FOP gene. |