Yesterday I arrived in Rochester, Minnesota, preparing to participate in the Social Media week events, including the Social Media Residency, Social Media Summit, and meeting of the Social Media Health Network, hosted by the the renowned Mayo Clinic’s Center for Social Media. If you remember, I wrote an essay awhile back about my use of social media in connection with Case and the MPS community and was blessed to win a full scholarship to these events. Thank you again to all of you who voted!
“But why?” you might say. What is the purpose? Why is social media so important that you’d spend a week away from your kids, your life, to go to Minnesota, of all places, just as it’s getting… cold.
I answer that question as part of the panel on which I’m speaking on Wednesday, but here’s some background.
I never expected social media to be such a useful tool. It started as just a lifeline to connect with other parents, but then when I saw how much it could help in advocating and caring for Case, it became another tool in my arsenal of caregiver advocacy. Specifically, I see it as a way:
1) To learn: We can be connected to articles about new research, special education, assistive technology and other areas that we never would have found. We can learn from other parents who have been there before as well as experts in those fields that we never would have had access to otherwise.
2) To teach: Social media is such a collaborative process. Just because we are learning doesn’t mean we don’t also have things we can teach others. It is part of building upon the knowledge that we’ve gained and using it to help others so they can do the same.
3) To connect: Especially in the area of rare disease, it is easy to feel alone. But social media not only provides the means to connect with others, it opens up an entire world of people and organizations that we didn’t even know we wanted to connect with! In our case, it took us from the world of MPS to seeing the entire rare disease community, and then seeing the interaction with pharma, government, patient advocacy, special education, and assistive technology. Others might find yet even different areas and sources that resonate with them.
So in short, social media is not going away. And since I am a strategist by profession, I am here to try to take what I’ve learned and turn it into a cohesive social media strategy for the betterment of our MPS and rare disease community.