23andMe announces the appointment of a Sarcoma Medical Advisory Committee

This week 23andMe also announced the creation of an Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians detailed below. To learn more, please visit 23andMe's Blog

 

23andMe Sarcoma Community Reaches 500 - BeatSarcoma Founder shares her interest in the program

There is strength in numbers. 23andMe is well on its way to achieving the 1,000 person Sarcoma Community milestone. 

We have over 500 individuals who have joined our sarcoma group from all over the world and with ties to several different patient organizations. The potential of this community to make a difference in the understanding of sarcoma and the development of the effective therapies is enormous. The value in research comes from you, from individuals with sarcoma sharing with us your genetic information and survey responses. 

We need your help in spreading the word about our 23andMe Sarcoma Community. If you are part of any sarcoma online forums, advocacy groups, or social networking sites, please let your community know about our research efforts at 23andMe. The link to share is:www.23andme.com/sarcoma. Thank you!

Nathalie Criou, sarcoma survivor and founder of BeatSarcoma, has been instrumental in the 23andMe Sarcoma Community outreach effort. Please read on to learn more about Nathalie's story:

I was diagnosed with sarcoma in late 2006, and spent most of 2007 in treatment for the disease. After my diagnosis, I was struck by how little was known about sarcoma and how difficult it was to find people in my situation. The local oncologists referred me to sarcoma center specialists - however these world specialists had very little understanding of the disease themselves and even an accurate diagnosis was hard to find!

I received 8 different sarcoma diagnoses and 7 different treatment recommendations. I spent hours researching published papers on sarcoma to help me decide on a treatment path. I realized that most studies were not significant because the number of enrolled patients averaged about 3...There was no way to gauge how *I* would respond to any particular approach. My physicians referred to my treatments as 'experimental', 'unproven'. I felt like anything would be a big shot in the dark...and I probably had only one shot...

Research in this field is trailing that of other cancers, yet sarcoma represents 20% of all childhood cancers, pointing at some genetic causes that could never be established through a lack of scalable research programs. This situation was unacceptable to me and I created a nonprofit, BeatSarcoma, as a vehicle for change. When 23andMe approached me with their idea of building a sarcoma community and free large-scale research program, I was thrilled. It addressed exactly the two most critical needs of the sarcoma community with a format that is perfect for our scattered group. Sarcoma research must be innovative, as traditional research formats have not yielded results so far. 23andMe embodies this spirit of innovation.

23andMe is eager to work with sarcoma specialists to drive toward the best possible results and has actively pursued partnerships with the world-leading experts. I immediately signed up to help in my own little ways and I will continue to do anything I can to support this effort. I really want this program to succeed so we can further our understanding of sarcoma. I trust that the model can be replicated over other cases of rare diseases.

Please help us spread the word through your local sarcoma organization, physicians and fellow patients or survivors. The success of this program rests on our shoulders!

Nathalie Criou

Founder BeatSarcoma

www.beatsarcoma.org

Help us with the fight against sarcoma. Join the 23andMe Sarcoma Community.

Research Update - sarcoma

For Release Monday February 14, 2011 Noon EST

For information contact:               Charles Keller MD (503-494-1210, keller@ohsu.edu), or

                                                                Tamara Hargens-Bradley,

Senior Communications Specialist

Oregon Health & Science University/Doernbecher Children's Hospital

 (Office): 503-494-8231   (Fax): 503-494-8246   hargenst@ohsu.edu

In a report published today as the Featured Article in the journal Cancer Cell, investigators at the Oregon Health & Science University (OHSU) reveal interesting new findings for a kind of cancer called sarcoma.  The most common sarcoma of children occurs in the muscle and has an appearance of muscle.  In adults, sarcomas are often even more primitive appear.  In their report, the Keller Laboratory reveals that childhood and adult sarcomas are linked in their biology, mutations and the cells from which these tumors first start.

Childhood muscle cancer, or rhabdomyosarcoma, is a condition that when spread throughout the body leads to a low survival rate – only 20 – 40%.  In adults with soft tissue sarcomas, survival can be even lower.  Now, for the first time, scientists and doctors know from where these tumors arise and what drives them to grow and spread.  Armed with this new information, the researchers in the Pediatric Cancer Biology Program at OHSU are looking for ways to stop or eradicate these sarcomas.

“A commonly held belief is that cancers should be cut out, burned out or killed.  There is a fourth option – to have cancer cells choose to become normal cells, in this case muscle cells,” says Dr. Keller, who led the study.  “A least for a subset of patients, possibly the ones with hereditary cancer, one approach suggested by our research might be to administer drugs that muscle cancers to convert into non-cancerous muscle fibers.  This is a minority opinion, but one held by a small group of careful scientists throughout the US and abroad.”

The survival rate for childhood muscle cancer that has spread has remained unchanged for more than 40 years.  It has reached the point that increasing the intensity of chemotherapy, radiation or surgery is no longer having any improved effect.  A novel approach taken by Keller and his colleagues in the laboratory as well as in new clinical trials is to use non-chemotherapy medicines to inhibit “molecular targets” such as growth factor receptors in this disease.  Suman Malempati, Director of the Oncology Developmental Therapeutics Program at OHSU’s Doernbecher Children’s Hospital, is the lead on a national clinical trial of one such growth factor inhibitor.  This study is the first trial to incorporate a molecularly-targeted drug into a clinical trial for childhood muscle cancer for the Children’s Oncology Group/Curesearch, a nationwide network of hospitals, doctors and leading scientists that develop new treatments for childhood cancer.  This type of therapy tailored to a cancer’s mutation was first pioneered at OHSU by DeBakey-Lasker Award Recipient, Dr. Brian J. Druker.  Dr. Druker and his colleagues developed a non-chemotherapy pill, Gleevec, which when taken each day causes a form of blood cancer, chronic myelogenous leukemia, to remain dormant indefinitely.  Personalized Cancer Care for children and adults is the primary mission of the Knight Cancer Institute at OHSU. 

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Charles Keller, M.D.        Associate Professor       Leader, Pediatric Cancer Biology Program
Pape' Family Pediatric Research Institute, Department of Pediatrics, Oregon Health & Science University
Tel 503.494.1210    Fax 503.418.5044    keller@ohsu.edu

our lab blog:  KellerLabBlog.blogspot.com     

our Pediatric Cancer Biology Program:  http://pcb-ohsu.blogspot.com/               

our high risk/high reward therapeutics initiative:  http://pptiohsu.blogspot.com/