Nov 4, 2006
Sarah Ziegler National Director of Research
Attending and giving a presentation about the MHE Research Foundation and MHE research at the
Connective Tissue Oncology Society Conference CTOS Link was an experience I will not soon forget.
I arrived in Venice Italy two days early and got the chance to see many of the land marks in Venice.
I stayed in a hotel just a two minute walk to St Mark’s Square. This is really a picture perfect place.
As I was walking though this wonderful and magical city, I had the people living with MHE very much
on my mind and took as many pictures as I could to let all of you get the feeling of Venice and what I
was experiencing. I hope you all enjoy the pictures.
Then it was time to get down to business, the reason I had traveled so far. The conference was very
enlightening as I had the chance to learn so much more about Chondrosarcoma. I also had the
chance to meet the many physicians that I had been in contact with but had not had the chance to
meet in person. We each finally had the chance to put a face to our names. The many physicians I
spoke with asked me to bring this very important message home to people living with MHE. While
the chances are small about 1- 5% that an Exostosis / Osteochondroma will have malignant
transformation to Chondrosarcoma, everyone with MHE needs to be checked every 12 to 18
months. This gives your doctor a good base line to care for you. He /she will be able to more easily
see any changes that could occur and watch them closely to help you receive the best health care
possible. Please read the article authored by Dr. David Donati and Dr. Luca Sangiorgi both of whom
serve on the MHE Research Foundations Scientific and Medical Advisory Board. “What is
Chondrosarcoma? How it’s diagnosed & Treatment Guide” PDF Link
On a personal note, I took one mighty deep breath before I got up to give my presentation. All the
time thinking of the people with MHE and knowing the job I needed to do. Well I did not skip a beat,
once I started giving my presentation I never felt so comfortable in my life. My fear and apprehension
was gone and I got right down to business. I felt the wings of hope; like a baby bird who first starts
to fly and boy did I soar. My spirit was free to accomplish the job I traveled so far to do.
I meet with Dr. Junya Toguchida, President of CTOS who comes from Japan and he has offered to
take the time to translate all the clinical information about MHE into Japanese. This will to be put up
on the foundations website. I was also asked by Dr. Toguchida if I would consider attending a
meeting he is organizing next year in Japan and share my experience once again. The same goes for
a meeting I have been asked to attend in Span.
I met with the families that are organizing an Italian organization for MHE / Olliers disease and the
clinical information also is going to be translated into Italian and located on both websites.
Dr. Sangiorgi is such a considerate person, making sure we had the time we needed to spend
together not only to go over some research related matters but he also sat with the families and
translated for us. Dr. Sangiorgi was the program director for the conference. I know first hand just
how busy he was. The families had the time together and shared our (((hearts))) and when you do
this the language barriers simply melt away. I know the children in Italy are in very good and caring
hands. I got the chance to slip away from the meeting and simply walk though Venice and speak with
these families just one parent to another.
I have had the opportunity to work closely with Dr. Sangiorgi over this past year and he is simply a
joy to work with. I made many more contacts by attending this conference that will help bring MHE
Research forward in the area of Genotype – Phenotype research that is now being conducted by Dr.
Sangiorgi and Dr. Wim Wuyts and the foundation. I also made new connections with researchers
working on animal models used in MHE research. We will be in touch with them shortly.
In closing I want to truly express to everyone the wings of hope are truly being felt around the
world. The Board of Directors was honored that our foundation was asked to present our work to all
of the attendee’s of the Connective Tissue Oncology Conference. This foundation remains committed
to bringing awareness, education and MHE research, around the world and a better quality of life to
all people affected by MHE.
PDF link to this article
My Very Best Regards
Sarah
Sarah Ziegler National Director of Research
Attending and giving a presentation about the MHE Research Foundation and MHE research at the
Connective Tissue Oncology Society Conference CTOS Link was an experience I will not soon forget.
I arrived in Venice Italy two days early and got the chance to see many of the land marks in Venice.
I stayed in a hotel just a two minute walk to St Mark’s Square. This is really a picture perfect place.
As I was walking though this wonderful and magical city, I had the people living with MHE very much
on my mind and took as many pictures as I could to let all of you get the feeling of Venice and what I
was experiencing. I hope you all enjoy the pictures.
Then it was time to get down to business, the reason I had traveled so far. The conference was very
enlightening as I had the chance to learn so much more about Chondrosarcoma. I also had the
chance to meet the many physicians that I had been in contact with but had not had the chance to
meet in person. We each finally had the chance to put a face to our names. The many physicians I
spoke with asked me to bring this very important message home to people living with MHE. While
the chances are small about 1- 5% that an Exostosis / Osteochondroma will have malignant
transformation to Chondrosarcoma, everyone with MHE needs to be checked every 12 to 18
months. This gives your doctor a good base line to care for you. He /she will be able to more easily
see any changes that could occur and watch them closely to help you receive the best health care
possible. Please read the article authored by Dr. David Donati and Dr. Luca Sangiorgi both of whom
serve on the MHE Research Foundations Scientific and Medical Advisory Board. “What is
Chondrosarcoma? How it’s diagnosed & Treatment Guide” PDF Link
On a personal note, I took one mighty deep breath before I got up to give my presentation. All the
time thinking of the people with MHE and knowing the job I needed to do. Well I did not skip a beat,
once I started giving my presentation I never felt so comfortable in my life. My fear and apprehension
was gone and I got right down to business. I felt the wings of hope; like a baby bird who first starts
to fly and boy did I soar. My spirit was free to accomplish the job I traveled so far to do.
I meet with Dr. Junya Toguchida, President of CTOS who comes from Japan and he has offered to
take the time to translate all the clinical information about MHE into Japanese. This will to be put up
on the foundations website. I was also asked by Dr. Toguchida if I would consider attending a
meeting he is organizing next year in Japan and share my experience once again. The same goes for
a meeting I have been asked to attend in Span.
I met with the families that are organizing an Italian organization for MHE / Olliers disease and the
clinical information also is going to be translated into Italian and located on both websites.
Dr. Sangiorgi is such a considerate person, making sure we had the time we needed to spend
together not only to go over some research related matters but he also sat with the families and
translated for us. Dr. Sangiorgi was the program director for the conference. I know first hand just
how busy he was. The families had the time together and shared our (((hearts))) and when you do
this the language barriers simply melt away. I know the children in Italy are in very good and caring
hands. I got the chance to slip away from the meeting and simply walk though Venice and speak with
these families just one parent to another.
I have had the opportunity to work closely with Dr. Sangiorgi over this past year and he is simply a
joy to work with. I made many more contacts by attending this conference that will help bring MHE
Research forward in the area of Genotype – Phenotype research that is now being conducted by Dr.
Sangiorgi and Dr. Wim Wuyts and the foundation. I also made new connections with researchers
working on animal models used in MHE research. We will be in touch with them shortly.
In closing I want to truly express to everyone the wings of hope are truly being felt around the
world. The Board of Directors was honored that our foundation was asked to present our work to all
of the attendee’s of the Connective Tissue Oncology Conference. This foundation remains committed
to bringing awareness, education and MHE research, around the world and a better quality of life to
all people affected by MHE.
PDF link to this article
My Very Best Regards
Sarah
Power point presentation from the CTOS conference presented by Sarah Ziegler on behalf of the
MHE Research Foundation. Please use the scroll bar located of the side of the power point
presentation or simply using your mouse and click on the power point it self to view each slide.
PDF link to this presentation CTOS presentation
MHE Research Foundation. Please use the scroll bar located of the side of the power point
presentation or simply using your mouse and click on the power point it self to view each slide.
PDF link to this presentation CTOS presentation
Poster of MHE Research at the CTOS conference, Genotype-Phenotype Study in 240 MO Patients
PDF file link
PDF file link
Poster of MHE Research at the CTOS conference EXT - Mutation Analysis in Sporadic and
Hereditary Osteochondroma Secondary Chondrocarcoma Tissues and Peripheral Linphocytes PDF file link
Hereditary Osteochondroma Secondary Chondrocarcoma Tissues and Peripheral Linphocytes PDF file link
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Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life
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located in the UK
By the Health On the Net Foundation. Click here to verify.# HON Conduct 282463 and is linked on the NIH
National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient
Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life
sciences a free online service providing access to the very best Web resources for education and research
located in the UK
The MHE Research Foundation is proud to be working with the EuroBoNeT consortium, a European Commission
granted Network of Excellence for studying the pathology and genetics of bone tumors.
granted Network of Excellence for studying the pathology and genetics of bone tumors.
