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| 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. |
| Name: | Nicole B |
| City: | london |
| State: | on |
| Country: | canada |
| E-mail address: | nicky_girl14@hotmail.om |
| Name: | Anne-Sophie Simonsen |
| City: | esbjerg |
| Country: | Danmark |
| E-mail address: | plet5@hotmail.com |
| Comments: | hey
i would very much like to see the documentary a girl who turned to stone, it has been showing on discovery channel, and i can't find it, is there anybody who knows where i maybe could find the documentary? please write me back on my mail. love from Anne-Sophie, |
| Name: | Deborah |
| E-mail address: | Bigwoods7@aol.com |
| Comments: | Have you ever looked into a product called Xango for this condition. I have heard lots of testamonials from many people about help for other types of physical problems. Please let me know. I saw your story on the discovery health channel and my heart goes out to you. |
| Name: | p.fletcher |
| City: | cirencester |
| Country: | UK |
| E-mail address: | p_flt@yahoo.co.uk |
| Comments: | To clarify, my email address has an underscore after the letter "p" which appears not to be visible here. If anyone is interested in the principles of yoga, I'm more than happy to point them out. |
| Name: | p.fletcher |
| City: | cirencester |
| Country: | UK |
| E-mail address: | p_flt@yahoo.co.uk |
| Comments: | Hi. I saw the documentary about the condition FOP in the UK(channel 5) featuring amongst others a young girl called Luciana. Perhaps yoga techniques could help some sufferers of this if they have an affinity for them. For those immobilised it can help psychologically-as it can help all of us- and for those like Luciana who knows, it may help physically too. Yoga is a benign form of mental and physical practice that is gentle and helps us maximise our potential in whatever situation we are, allowing ones situation to be seen in the widest of contexts, and to ease the suffering that is possible in this world. Ultimately, for those so inclined , it is a spiritual persuit, but it can work at whatever level of well being one aspires to, for instance maintaining mental stability and maximising ones health given ones circumstances. Is there any way to get in touch with Luciana or others featured on the tv program? |
| Name: | Wince Lyons |
| City: | Sault Ste. Marie |
| State: | Ontario |
| Country: | Canada |
| E-mail address: | wince.lyons@sympatico.ca |
| Comments: | Hi,
My nieces 6 year old daughter was just diagnosed with FOP and we are all still in shock and dont know where to start. |
| Name: | Alex Goodrich |
| State: | Wisconsin |
| Country: | USA |
| E-mail address: | goodrich_13@hotmail.com |
| Comments: | I've signed this guestbook before. I am a Senior in high school and have been studying FOP since September. I had the chance to meet Dr. Kaplan while I was in California attending the Hayden's Hope Fundraiser and I had the honor of meeting him again this past week along with Dr. Shore and the entire FOP research team at the University of Penn. The work they are doing there is amazing and I know that they will have a cure for all of you soon! To everyone at the FOP Lab in Penn - You are all amazing and God bless every one of you for the fabulous work you are doing! I hope that I'll be working along side of you some day! |
| Name: | Alex Goodrich |
| State: | Wisconsin |
| Country: | USA |
| E-mail address: | goodrich_13@hotmail.com |
| Comments: | I've signed this guestbook before. I am a Senior in high school and have been studying FOP since September. I had the chance to meet Dr. Kaplan while I was in California attending the Hayden's Hope Fundraiser and I had the honor of meeting him again this past week along with Dr. Shore and the entire FOP research team at the University of Penn. The work they are doing there is amazing and I know that they will have a cure for all of you soon! To everyone at the FOP Lab in Penn - You are all amazing and God bless every one of you for the fabulous work you are doing! I hope that I'll be working along side of you some day! |
| Name: | Erica Cove |
| City: | West Haven |
| State: | CT |
| Country: | USA |
| E-mail address: | ECove1@newhaven.edu |
| Comments: | Hello
I am a graduating in May with a bachelor's degree in science in both Biology PreMedical Concentration and Forensic Science. In fulfillment of my honors thesis I chose to research FOP because I have been interested and amazed with the condition for years. I am working on developing a screening test and will be giving a presentation at the University of New Haven the week of 4/23. I would like to invite anyone with FOP or anyone who knows someone with FOP to come if I can have off campus people attend. Please email if you are interested and I will respond when I know the answer and the exact time and date and location of my presentation. |
| Name: | maria kuoppala |
| City: | helsinki |
| State: | helsinki |
| Country: | finland |
| E-mail address: | maria.kuoppala@saunalahti.fi |
| Comments: | what can i say...? i dont have that disease..i cant even imagine that world wheres fops are living. luciannas dogument take my heart..wish i could hold her and say hello princess. i have hopless feeling becouse i cant do anything to help. can i do something? all my love:maria from finland |
| Name: | BARBIE CEBEY |
| City: | MIAMI |
| State: | FLORIDA |
| Country: | US |
| E-mail address: | BCEBEY@BELLSOUTH.NET |
| Comments: | HI MY NAME IS BARBIE, MY SISTER MARIA HAS FOP AND HAS TO GET AN ABDOMINAL HYSTERECTOMY DUE TO HEAVY BLEEDING. IS THERE ANYONE THAT MIGHT HAVE HAD IT DONE. WE ARE CONCERNED AND DOCTORS DON'T KNOW MUCH REGARDING THE FOP. PLEASE I WOULD GREATLY APPRECIATE ANY ADVISE OR HELP YOU CAN GIVE US. MY SISTER HAS BEEN IN THE HOSPITAL FOR THE PAST 32 DAYS AND HAS HAD OVER SIX BLOOD TRANSFUSIONS. |
| Name: | BARBIE CEBEY |
| City: | MIAMI |
| State: | FLORIDA |
| Country: | US |
| E-mail address: | BCEBEY@BELLSOUTH.NET |
| Comments: | HI MY NAME IS BARBIE, MY SISTER MARIA HAS FOP AND HAS TO GET AN ABDOMINAL HYSTERECTOMY DUE TO HEAVY BLEEDING. IS THERE ANYONE THAT MIGHT HAVE HAD IT DONE. WE ARE CONCERNED AND DOCTORS DON'T KNOW MUCH REGARDING THE FOP. PLEASE I WOULD GREATLY APPRECIATE ANY ADVISE OR HELP YOU CAN GIVE US. MY SISTER HAS BEEN IN THE HOSPITAL FOR THE PAST 32 DAYS AND HAS HAD OVER SIX BLOOD TRANSFUSIONS. |
| Name: | sadk |
| City: | kjasd |
| State: | ja |
| Country: | sd |
| E-mail address: | asdf@asda.com |
| Comments: | asdf asd faLALAL |
| Name: | Jenny Kidd |
| City: | Croydon |
| State: | Surrey |
| Country: | UK |
| Comments: | I'm an AS Level Biology student, and as part of my course have to do an issue report related to a biological theory. I had seen something in the text book about FOP, to do with signal proteins, and decided it looked really interesting. I have used the IFOPA website a lot to get information and links to more sites; it's been really great.
I never knew about FOP before now, but I'm really glad I chose to do this for my issue report. Thanks for all the help you've given, and I hope a treatment or maybe even a cure is found soon. Keep up the good work. Good luck and God bless to all. |
| Name: | Sheryll Baskin |
| City: | Tennant Creek |
| State: | Northern Territory |
| Country: | Australia |
| E-mail address: | betterhealthnaturally@hotmail.com |
| Comments: | Hi, I am a registered nurse and naturopath. I am also Dylan Barkers' aunty. Dylan has FOP. I have recently returned from New Zealand after spending a couple of days with Dylan and his family. I asked Dylan if he would mind me doing a case study/thesis on him to increase my own personal awareness of his condition with the potential of having it published in a couple of nursing journals both here in Australia and New Zealand. I have also nursed a women in New Plymouth, New Zealand with the same condition. In a months time I am moving to Darwin for a six month contract nursing at the Royal Darwin Hospital. I was excited when Dylan told me that there is a set of twins with FOP in Darwin. I will be very keen to meet with them and their family. |
| Name: | Kevin & Amy Brummett |
| City: | Hendersonville |
| State: | TN |
| Country: | USA |
| E-mail address: | lawbrum319@yahoo.com |
| Comments: | I am very close friends to Wayne & Traci Gopshes whose son has FOP. We are getting ready to join the organization now and look forward to helping out in anyway we can. We live in Tennessee and do not know of anyone with the diagnoses in our area. We do have a pretty large medical community with Vanderbilt being in the immediate area. We hope to raise some awareness in the community. |
| Name: | Claire |
| City: | Ludlow |
| State: | Shropshire |
| Country: | England |
| Comments: | i saw about this on a TV program, and it made me want to raise awarness so i am raising money for sufferers of FOP. hopefuly we can find a cure!! |
| Name: | Cindy |
| City: | Soutjfield |
| State: | MI |
| Country: | USA |
| E-mail address: | mudchava@aol.com |
| Comments: | I was recently diagnosed with FOP by Dr. Kaplan & others. I also have a bone disease known as Osteogenesis Imperfecta.
Along with those two diseases, which leave me bedridden, in Hospice, I have other terminal health problems. I appplaud web sites like these for their knowledge. At 41 years of age I know with every day new research holds out more hopeful promises to come. Cindy mudchava@aol.com |
| Name: | Breanne |
| City: | Cameron Mills |
| State: | New York |
| Country: | US |
| E-mail address: | Stormybd@hotmail.com |
| Name: | jess deegan |
| Country: | uk |
| E-mail address: | j.dizzle17@hotmail.com |
| Comments: | kev turner,Sorry I haven’t emailed for AGES…getting internet upgrade!...it’s taken SO long that it's deleted my emails and i no longer have your address
hope u see ths and reply jess.xx (FOPer for life!) |
| Name: | Jacqueline Hood |
| City: | Glasgow |
| Country: | Sotland |
| E-mail address: | jackie.hood@yahoo.co.uk |
| Name: | Aidlewise Jugeshuarsingh |
| City: | Maturin |
| State: | Monagas |
| Country: | VENEZUELA |
| E-mail address: | aidlewise@gmail.com |
| Comments: | I am a medical student (5th year), i just heard about this disease like few days ago, and i am really amazed about it... i really hope that Dr fred can finally find a cure for this disease!!! and pray for that... Dr i will also be thankful if you send more information about it and the way i can help to your research... please !!!
Dr Kapplan send an e-mail to aidlewise@gmail.com or aidlewise@cantv.net... Thanks and GOD help all those people to find a cure!!! |