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.
Power point presentation
PDF conveeted link to this presentation CTOS presentation
Power point presentation
PDF conveeted 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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Click here to verify.# HON Conduct 282463 and is the patient support link on the US Government Genetics Home Reference (http://ghr.nlm.nih.gov)
website, also linked for Patient Information on The Diseases Database a cross-referenced index of human disease, as well as 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
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