TMC PULSE

t m c » p u l s e | s e p t e m b e r 2 0 1 6 17 to ride horses and is proficient in sign language, how he can be smart and funny at the same time. He is a whiz at Houston land- marks—even zooming down I-45 in a car, he can tell you exactly where he is and, most importantly, where the Target is located. "I hear it over and over again, how places like Facebook are a lifeline because it is a way to connect with other families," Schaaf said. "One of the families I work with calls it her tribe. She men- tioned that the other day, she was at the store and someone made a comment about her children, like, 'What did she do? She probably drank or did drugs during pregnancy to cause this.' She said, 'I've had these situations a few times over the years and this time, for the first time, I could laugh about it because now I have an answer and I know for myself what caused it, and that it wasn't me. And I have my tribe.'" Going Viral Many health care institutions are embracing social media to help their research and patient care. Digital platforms such as MyGene2, for example, encourage individuals to input their genetic information into an online database with hopes of build- ing a large, searchable information system. "I think, increasingly, we're recognizing that one of the big obstacles to gene discovery has been sharing data," said Michael Bamshad, M.D., pediatrician and human geneticist at the University of Washington and co-founder, along with Jessica Chong, Ph.D., of MyGene2. While clinicians and researchers can create public profiles as well, they are bound by ethics (specifically, the International Review Board's common rule) and by HIPAA regulations, which are designed to protect the security and privacy of health informa- tion. So they can't share nearly as much information as a patient's family can. A family can post detailed health information, includ- ing all of their candidate genes, genetic test results and genetic data. They can share as much as they want, and the more they share, the more likely it is that matches will be made. To moms who are ready to advocate for their children, to parents who are determined to find answers, to anyone struggling with new diagnoses, grief or loss, the sharing of knowledge and of personal health stories can be invaluable. It can also be lucrative. Two years ago, the Ice Bucket Challenge went viral on social media. Participants posted photos and videos of buckets of ice being dumped on their heads—all to encourage donations for research related to amyotrophic lateral sclerosis, or ALS, an incurable neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Recently, the ALS Association announced that funding from the challenge—which amassed mil- lions—directly aided in the discovery of a newly identified gene, NEK1, now considered one of the most common genes respon- sible for ALS. This breakthrough will help researchers develop therapies for the devastating disease. And just this past May, Humans of New York, a blog-turned- social-media-force with more than 20 million followers, published a series of short narratives highlighting patients, families, caregiv- ers and clinicians at New York's Memorial Sloan Kettering Cancer Center. The stories were part of a fundraising campaign. In the introductory Instagram post on May 5, Humans of New York creator Brandon Stanton wrote: "Obviously, these are not going to be easy stories to read. These are war stories. The treatment of cancer can be nearly as violent as the condition itself, and even the doctors will frame their efforts in terms of warfare. But the fight against pediatric cancer is uniquely tragic because the battlefield is the body of a child. … So yes, these are war sto- ries. But this is also the story of humanity's bold response to the greatest injustice of nature. And as we learn these stories, we'll be raising money to play our own small part in the war." The initial goal was to raise $1 million for the Center. By May 20, the last day of fundraising, Stanton announced that 90,000 readers had donated nearly $3.4 million. He gushed: "You are the most caring community of people on the internet." Michael Mitchell, far right, with the Hanners family at The Houston Zoo. I think, increasingly, we're recogniz- ing that one of the big obstacles to gene discovery has been sharing data. — MICHAEL BAMSHAD, M.D. Pediatrician and Research Geneticist at the University of Washington and Co-founder of MyGene2

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