Sarcoma Community Update

Genetic research is a numbers game. The more people who contribute to the effort, the more powerful it gets. As our Sarcoma Community grows with survey responses and genetic data from participants, we learn more about sarcoma and people’s responses to treatment.

We are over halfway to our goal of 1,000 active participants and we continue our quest for new discoveries to share. More than 52 percent of our current community members have joined through advocacy groups that have partnered with 23andMe, such as ACOR, Sarcoma UK, Sarcoma Alliance, and Beat Sarcoma. Others have learned about the Sarcoma Research Initiative through Yahoo groups, sarcoma blogs, social networking sites, friends, and visits to the 23andMe website. In the last two months, over 100 new Sarcoma Community members have claimed their kits and been genotyped. More than 350 members have already taken the sarcoma survey — we have received over 80 new responses since our last update in early March. Thank you all for the support and contribution to this study.

Our community growth is exciting, but we still have a long way to go to reach 1,000 members. What is the critical number needed to reach a breakthrough? 600 participants? 800? 1,000? Our 23andMe scientists continuously look at the data, searching for a better understanding of the genetic components of sarcoma and its treatment. While we continue on our quest for discoveries, we ask for your help to spread the word to sarcoma patients worldwide. The link to share is: http://www.23andme.com/sarcoma.

Our goal is to feature at least one sarcoma event or patient story with each community post. Thank you to National Leiomyosarcoma Foundation (NLMSF) President Joni Fixel for sharing news from her organization’s annual meeting with the 23andMe Sarcoma Community.

Last month, the National Leiomyosarcoma Foundation (NLMSF) hosted its annual membership meeting in Branson, MO from April 7-9, 2011. It was a wonderful weekend of sharing, caring and learning about advances in the research funded by the NLMSF. On Thursday evening attendees met for a night to meet and share with each other. This was an opportunity to renew old friendships and make new ones. On Friday we heard from one of the researchers and a nutritionist who works with cancer patients. In the afternoon, attendees were offered an opportunity to tour the College of the Ozarks (also known as Hard Work U) where college students work instead of paying tuition. On Saturday morning the Annual Membership meeting took place.  Additional presentations were given by the doctors where the foundation funds the research. Members were able to ask questions directly of the research doctors and able to understand this rare cancer.  An update was given on the accomplishments of the NLMSF in the past year and the goals for the upcoming year. New Board members were announced and introduced to the membership. Throughout the weekend, information about 23andMe was given out and available for all attendees. For more information go to www.nlmsf.org.

- Joni M. Fixel, President NLMSF

We look forward to sharing more information with the community soon. Please email information or questions to sarcoma-help@23andme.com. Thank you again for supporting this valuable research effort.


  • Tony Mach

    We would really need something like that for ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and for Fibromyalgia.

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