18 posts from October, 2011

Announcing the “Calling All Types” Campaign for Diabetes Awareness

Posted October 27th, 2011 by

In June, we told you about our new partnership with BBK Worldwide, a pioneer in healthcare communications. Now, we’re excited to report that our first outreach project together is kicking off.

Visit CallingAllTypes.com, a Place for People with Type 1 and Type 2 Diabetes to Share Their Stories

In preparation for American Diabetes Month in November, PatientsLikeMe and BBK Worldwide announced today the launch of a new online diabetes health movement entitled “Calling All Types.” This innovative social health initiative encourages people with type 1 and type 2 diabetes to share their real-world experiences and help raise awareness of the disease, which affects 25.8 million children and adults in the US (or 8.3% of the population).

Are you a diabetes patient? Share your thoughts and stories at CallingAllTypes.com. Within seconds, social media outlets including Twitter, Facebook and YouTube will pick up and share your words across the Internet. The goal is to create instantaneous viral awareness that will inform the public, including policy makers and health professionals, about the real toll diabetes takes on individuals and families.  (Check out the video below to learn more.)

In addition to rallying supporters at CallingAllTypes.com, the campaign is focusing much of its initial awareness-raising efforts in Atlanta, Georgia, where diabetes prevalence exceeds the national average by a full percentage point. “We are incorporating a “take a community by storm’ approach,” says Bonnie A. Brescia, founding principal of BBK. For each of the first 10,000 visitors to post a comment at CallingAllTypes.com during November, the campaign will donate $1 to the Atlanta chapter of the American Diabetes Association.

So if you’ve got something to say about diabetes, the fastest-growing chronic disease in US history, don’t hold back. Spread the word today at CallingAllTypes.com. Then, if you haven’t already, join the diabetes patients at PatientsLikeMe who are coming together to share experiences, find others like them and take control of their health.


Moving Genetic Data Discovery Forward

Posted October 26th, 2011 by

In August, we proudly announced that PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, had won a prestigious “Young Investigator Award” from the International Congress for Human Genetics (ICHG). As promised, here is Catherine’s first-person report from the conference, held October 11-15, 2011, in Montreal.

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12th International Congress of Human Genetics

The 12th International Congress for Human Genetics (ICHG) was a fantastic learning experience with 7,200 geneticists, doctors and researchers in attendance – making it the largest ICHG ever.  The talks were of the highest quality, and the latest genetics research was presented and discussed.  It was an honor to give one of these presentations, since only 8% of those who applied were awarded the opportunity.

That brings me to the main purpose of this blog post: A big THANK YOU to the members of PatientsLikeMe. Your data made our presentation possible. I spoke about the ALS pilot program for genetics entry and search functionality, which allows ALS patients to enter their causative genetic mutations (such as SOD1 A4V, SOD1 D90A and VAPB P56S) and find others with the same genetics. It was a groundbreaking project, and we hope to implement it site-wide in the near future.

I also presented some of the key results from our recent survey on genetic testing:

  • 16% of you have had some form of genetic testing.
  • Of those who have been tested, 31% have had a direct-to-consumer genetic test.
  • If cost were NOT a consideration, 83% of you would be at least moderately interested in getting a comprehensive personal genetic test.
  • 68% of you said you would be at least moderately interested in finding others with the same genetics as you.

Thanks again for your participation in the survey, for being members of PatientsLikeMe and for sharing in our research efforts. I hope that next year I’ll be presenting PatientsLikeMe’s site-wide genetics functionality.

PatientsLikeMe member cbrownstein