Hereditary Disease Circle is an effort to promote synergistic cooperative relationships between organizations and researchers within in the neurological disease community. This blog reports on HDCircle's undertakings as we work towards the goal of bringing forth cures.
Many of our friends in this arena are the faces posted on HDCircle.org along side their respective organizations. These professionals are deeply committed to bringing about positive change and generally operate within Washington DC circles. They blog better, so check out their posts at disruptivewomen.net as well as researchamerica.org, fastercures.org, and the geneticalliance.org.
The Genetic Alliance is a wonderful catch all organization for rare diseases organized by Sharon Fontaine Terry. Sharon Terry was recently honored as an Ashoka Fellow for her efforts. She is very gracious and amazing. None of us are focused on the accolades. We just want solutions. The upcoming Genetic Alliance conference will focus on advancing novel partnerships promoting transformational leadership.
My current activities fall within the category of networking with the intent of quietly applying the "butterfly effect" to promote positive change by asking the right questions. I am also getting prepared to go public with a media campaign if necessary. My passion is driven by the loss of my wife to Huntington's Disease and its continuous looming threat to my family and many others. I will not stand idle when science has evolved the capability to cure these kind of illnesses, but the system of bringing cures to patients is broken.
Hope without action is dead. I attended the Research America National Forum on March 16th. In the podcast of this meeting, you will find that Francis Collins and Margaret Hamburg give us the greatest hope that the barriers to cures are being removed. Now is the time. Those organizations who follow the example of the Cystic Fibrosis Foundation and who step up to the plate will be given a home run.
Thanks for reading. Take care!
Jonathan
