Tuesday, February 15, 2011

"I am a Survivor" (or at least that's what they tell me)

Hey Everyone --

I had my quarterly scans today (CAP CT-Scan only this time) and all was clear.  Yeah!  Perhaps even better yet is the fact that, now that I'm nearly 2 years NED*, my scan schedule will drop to every 4 months going forward.  To help mark this anniversary, my Orthopedic Oncologist presented me with this hard-earned T-shirt:

Yes, I "doctored" the photo  :)

More outrageous celebration to follow on March 18, which is my "official" 2-year anniversary.  Until then, enjoy the rest of your week and always be thankful for good health!

* NED = No Evidence of Disease

Tuesday, February 1, 2011

Totally Free DNA Testing for Sarcoma Patients / Survivors

23andMe.com, a DNA research company, is now offering FREE DNA testing for those who have been diagnosed with Sarcoma. Their goal is to find at least 1,000 qualified individuals who have or have had sarcoma and to collect information regarding their experiences, environments, and responses to different therapies. They then will combine this information with the genetic data to find patterns that will help them better understand the biology of sarcoma. See https://www.23andme.com/sarcoma/ for the details.
According to one Sarcoma Oncologist that they quote: "There are clues that there are factors in our DNA that can contribute to the development of sarcomas of bone and soft tissues, but we still don't understand them very well. Now, through the novel 23andMe Sarcoma Community initiative, patients can take direct action to help make strides against their disease."
By all accounts this is a totally legit operation with a good reputation in the sarcoma community.  Thus far, over 500 sarcoma patients/survivors have already gotten involved with this initiative.  For that reason, I signed up for this the other day, a process which involved answering about a half dozen questions about my diagnosis, providing my contact information, and then going through an online confirmation process to order the DNA kit.  Since then, I've received an email response from 23andMe indicating that "you qualify to join the community and receive the 23andMe Personal Genome Service for free instead of the standard $199 plus a monthly subscription".
My correspondence with 23andMe.com also pointed me to the following FAQs about research at 23andMe:

How does the research work? 
The kind of research 23andMe does requires both genetic and non-genetic information from participants. The genetic information comes from analysis of the DNA extracted from a saliva sample. The non-genetic information - which includes physical traits, health history, behaviors and environmental exposures - is collected through easy online surveys.
By collecting and analyzing vast amounts of data, we hope to make breakthrough discoveries that will fundamentally improve how we diagnose, treat and prevent sarcoma.
How long will the research take?
It's important to remember that research can be a long process, but by taking charge and participating you can help drive research forward. Every person with sarcoma who lends his or her data gives scientists the opportunity to better understand this disease - and a shot at significantly improving its outcome.
What results will I get back?
By participating in the Sarcoma Research Community you get free access to the 23andMe Personal Genome Service™. While very little is known about the genetics of sarcoma, you can see how your genes may influence your risk for over 140 other diseases and conditions.
How is my personal information protected?
23andMe respects your privacy. 23andMe will not release your individual information to any outside company without your explicit consent. To prevent unauthorized access or disclosure of your data, 23andMe uses a range of physical, technical, and administrative procedures to safeguard the information we collect.
Will it affect my health insurance?
The Genetic Information Nondiscrimination Act (GINA) was signed into law in 2008. While this law is new, it was enacted to protect individuals against discrimination based on their genetics by health insurance companies or employers. Various states also have enacted protections against genetic discrimination for health insurance. Life insurance or disability providers are not covered under GINA.
What if I need help understanding my information?
23andMe can help provide access to board-certified genetic counselors trained to provide assistance with our service, but who are not 23andMe employees.

Just wanted to pass this information along to my readers as I'd like to see other sarcoma patients/survivors get involved.  You can sign up for this by going to https://www.23andme.com/sarcoma/ and clicking on the Get Involved button.  I think there's a lot of potential here.