Comments for Proteus Syndrome Foundation http://www.proteus-syndrome.org Raising money for research to find a cure for individuals living with Proteus Syndrome Fri, 07 Oct 2011 02:12:28 +0000 hourly 1 http://wordpress.org/?v=3.1.3 Comment on The cause has been found – What are your thoughts? by argelia larrondo http://www.proteus-syndrome.org/blog/thoughts/#comment-3153 argelia larrondo Fri, 07 Oct 2011 02:12:28 +0000 http://www.proteus-syndrome.org/?p=351#comment-3153 Gracias a Dios y al gran esfuerzo de la fundacion y sobre todode la dedicacion del Dr. Bieseker se ha encontrado la causa del PS aunque mi Andrea yano esta fisicamente con nosotros se que en donde se encuentre estara feliz por este descubrimiento. En horabuena y en espera de que pronto se encuentre la cura. Argelia Gracias a Dios y al gran esfuerzo de la fundacion y sobre todode la dedicacion del Dr. Bieseker se ha encontrado la causa del PS aunque mi Andrea yano esta fisicamente con nosotros se que en donde se encuentre estara feliz por este descubrimiento.
En horabuena y en espera de que pronto se encuentre la cura.
Argelia

]]> Comment on The Manifold Faces of Proteus Syndrome by Linda Peters http://www.proteus-syndrome.org/articles/manifold-faces-proteus-syndrome/#comment-2822 Linda Peters Tue, 20 Sep 2011 09:44:29 +0000 http://www.proteus-syndrome.org/?p=287#comment-2822 I possibly may have a minor case of proteus syndrome. Shortly after birth in 1940, doctors amputated a huge middle finger, left hand. Since then I have had many surgeries to correct continued bone growth and lipomas in that arm..No other abnormalities exist. I am healthy. My brother also has lipomas and a dermoid in his head. Can i help? I possibly may have a minor case of proteus syndrome. Shortly after birth in 1940, doctors amputated a huge middle finger, left hand. Since then I have had many surgeries to correct continued bone growth and lipomas in that arm..No other abnormalities exist. I am healthy. My brother also has lipomas and a dermoid in his head. Can i help?

]]> Comment on The cause has been found – What are your thoughts? by Barbara http://www.proteus-syndrome.org/blog/thoughts/#comment-2799 Barbara Sun, 18 Sep 2011 23:27:29 +0000 http://www.proteus-syndrome.org/?p=351#comment-2799 To the previous writer...breast cancer survivor, YAY...that is an interesting thought. Will pass along to Dr. Biesecker at our upcoming family and physician conference. Thanks and stay tuned! To the previous writer…breast cancer survivor, YAY…that is an interesting thought. Will pass along to Dr. Biesecker at our upcoming family and physician conference. Thanks and stay tuned!

]]> Comment on The cause has been found – What are your thoughts? by OT http://www.proteus-syndrome.org/blog/thoughts/#comment-2345 OT Sat, 20 Aug 2011 00:35:15 +0000 http://www.proteus-syndrome.org/?p=351#comment-2345 I'm a pediatric occupational therapist who had a client with Proteus Syndrome (she's still around but I no longer work at that therapy site). I'm VERY happy the cause has been found and I look forward to the cure !! I also happen to be a breast cancer survivor but don't know if the AKT1 gene was associated with my particular cancer. If it might help, even in the slightest way, that those with breast cancer undergo testing to help with PS research, please make it known to the BC community! (ie. the Susan Komen group, breastcancer.org, etc.). I’m a pediatric occupational therapist who had a client with Proteus Syndrome (she’s still around but I no longer work at that therapy site). I’m VERY happy the cause has been found and I look forward to the cure !!
I also happen to be a breast cancer survivor but don’t know if the AKT1 gene was associated with my particular cancer. If it might help, even in the slightest way, that those with breast cancer undergo testing to help with PS research, please make it known to the BC community! (ie. the Susan Komen group, breastcancer.org, etc.).

]]> Comment on The cause has been found – What are your thoughts? by Mary http://www.proteus-syndrome.org/blog/thoughts/#comment-1998 Mary Thu, 04 Aug 2011 03:16:58 +0000 http://www.proteus-syndrome.org/?p=351#comment-1998 Dr Biesecker has lived for the last 15 years as though he he had a child with PS. He loves the children, and adults too ,that suffer with PS. I am so proud of him and his determination to find the gene that caused Proteus syndrome. Now he has. Good job Dr Biesecker. Future generations are forever changed because of him. I ,and many others, have always prayed for a break through in the research of Proteus syndrome. And I asked God for the break through ro come through Dr Biesecker's work. God answered our prayers. Mary Dr Biesecker has lived for the last 15 years as though he he had a child with PS. He loves the children, and adults too ,that suffer with PS. I am so proud of him and his determination to find the gene that caused Proteus syndrome.

Now he has. Good job Dr Biesecker. Future generations are forever changed because of him.

I ,and many others, have always prayed for a break through in the research of Proteus syndrome. And I asked God for the break through ro come through Dr Biesecker’s work.

God answered our prayers.

Mary

]]> Comment on The cause has been found – What are your thoughts? by Barbara http://www.proteus-syndrome.org/blog/thoughts/#comment-1972 Barbara Tue, 02 Aug 2011 16:34:09 +0000 http://www.proteus-syndrome.org/?p=351#comment-1972 This is a wonderful development, indeed! We are all so grateful to Dr. Biesecker and his devoted team for the past 15 years. A nice problem to have now....repriting our materials removing "finding the cause of" I can see help, for those who need it most, in our lifetime! Barbara This is a wonderful development, indeed! We are all so grateful to Dr. Biesecker and his devoted team for the past 15 years. A nice problem to have now….repriting our materials removing “finding the cause of”

I can see help, for those who need it most, in our lifetime!

Barbara

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