Mayo Clinic Social Media Summit: Kari Ulrich's Patient Panel Talk

The impact social media is making on rare disease, an e-patient perspective.

Social Media in Health Care is Human.

What I have learned from Mayo’s Social Media Summit

10:35 pm and I am just getting started on my homework assignment. I am happily exhausted from this past week. I know I have done something worthwhile because I have gone beyond my limit of comfort physically, emotionally and spiritually.

I came to the summit as a patient scholarship recipient. I was representing a group of remarkable people with a rare disease. This summit was not about me, but about every patient that has touched my life with his or her experience. I needed to learn how to communicate on behalf of those who cannot.

The summit has taught me more than the power of communication. I have learned that to me the definition of social media in health care is more than written word.  It is the passion of the human spirit to make a positive a productive difference. Social Media in Health Care is Human.

Among the twitter celebrities I found wisdom, humility, values and integrity. I found role models that will shape my communication in a way no other has.  I will continue my journey in social media with the ethics of @SeattleMamaDoc and @MeredithGould.  My words and language will contain integrity thanks to the wisdom of @westr, @subatomicdoc and @burgessct. I will always remember the impact I am making and the ROI of my engagement through the humor of @chrisboyer I will continue advocating with integrity thanks to the influence of @rawarrior, @EdBennett and @ePatientDave.

I will never underestimate the knowledge of an e-patient and those who have traveled a path similar to mine. Virna Elly, Jill Plevinsky, Jim Pantelas and Corey Daniel King your passion will always live in my heart, we are in this together and I know our accomplishments will be many because of the connections we have made.

Words cannot express my gratefulness to Mayo Clinic, Ragan Communications, the Mayo Clinic Social Advisory Board, Lee Aase and his team for this life changing opportunity. I look forward to growing old with you all, as the Cowan’s have shown us age and wisdom is a wonderful thing. 

Two FMD heads are better than one!

Sarah  Kucharski and Kari Ulrich met each other on the Mayo Clinic Community Website. They discovered they have several things in common.

 1. They both have been diagnosed with Fibromuscular Dysplasia, a rare vascular disease.

2. They both share of love of social media and have applied for a scholarship to be apart of Mayo's Social Media Summit.


"Mayo Clinic is sponsoring an essay contest to award five scholarships for patients and caregivers to attend our Third Annual Health Care Social Media Summit and related events during the week of Oct. 17, 2011.

Voting on the community site continues until midnight Aug. 17, at which point Mayo's panel of judges will select the five scholarship recipients from among 15 finalists."

TODAY is the last day to vote

We are asking other FMD patients, their family and friends to take a moment to read the essays submitted. Log in and vote/comment. Lets make our voices heard!

Please click on links below to read submitted essays:

http://connect.mayoclinic.org/discussions/358-social-media-summit-scholarship-essay-kari-ulrich

http://connect.mayoclinic.org/discussions/336-social-media-summit-scholarship-essay-sarah-e-kucharski