A Sarcoma Community Update and Survivor Story

There is strength in numbers. With the help of our participants, we are well on our way to achieving our 1,000 person Sarcoma Community milestone. Thank you!

We have over 500 individuals who have joined our sarcoma group from all over the world and with ties to several different patient organizations. Just to give you an idea of how far we’ve come…

  • 23andMe has shipped 550 kits to community members all over the globe
  • Over 400 Sarcoma Community members have logged in and claimed their kits
  • Over 270 Sarcoma Community members have taken the sarcoma survey

The potential of this community to make a difference in the understanding of sarcoma and the development of effective therapies is enormous. The value in research comes from participants sharing with us their genetic information and survey responses. If you’ve already joined this effort, please remember to claim those kits, send in your spit, and fill out the sarcoma survey if you have not done so already!

We need everyone’s help in spreading the word about our 23andMe Sarcoma Community to reach that 1,000 person goal. 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: http://www.23andme.com/sarcoma.

In this update, we’d also like to share a story from Nathalie Criou, a sarcoma survivor and founder of Beat Sarcoma. Nathalie has been instrumental in the 23andMe Sarcoma Community outreach effort. Her experiences and advocacy related to sarcoma are truly inspiring.

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!

- Natalie Criou

We hope to have more stories and updates to share soon, but until then, please help us build this important research community!