Blog Archive

Monday, December 16, 2013

HERO: One who is revered for sacrifice, skills, dedication...

I'm in Italy this week on some business, where I am surrounded by Italian heroes, both mythical and real. While here I received notice of some videos you might like to see. These are the latest videos filmed at the US Hemophilia Experiences, Results, and Opportunities (HERO) Summit for Solutions, of which I took part. Some of our top opinion leaders from our community were invited together by Novo Nordisk to brainstorm ways to implement the findings of the HERO study, supported by Novo Nordisk, the largest psychosocial study on hemophilia ever done.

Please feel free to view!
The HERO Initiative: Improving Understanding of the Burden of Hemophilia on Families
<https://www.youtube.com/watch?v=YJTD3HMVxU8> ” focuses on our discussion in Workshop 2 around how hemophilia can affect the entire family in different ways, including emotionally, financially, and professionally. This video includes the following US HERO Summit participants:

·        Mary-Jane Frey, Nurse Coordinator, Children’s Hospital of Michigan
·        Chris Guelcher, Nurse Practitioner, Children’s National Medical Center
·        Dana Kuhn, PhD, President and Founder, Patient Services, Inc.
·        Dawn Rotellini, Director of Chapter Development and Training, National Hemophilia Foundation
·        Michelle Witkop, Bleeding Disorders Nurse Practitioner, Northern Regional Bleeding Disorder Center

The HERO Initiative: Working to Understand and Improve Pain Management in Hemophilia
<https://www.youtube.com/watch?v=keRjwamm67Y> ” focuses on our discussion in Workshop 3 around the impact of pain on the daily lives of people with hemophilia and approaches to better evaluate and manage this common complication. The following US HERO Summit participants appear in this video:

·        Mary-Jane Frey, Nurse Coordinator, Children’s Hospital of Michigan
·        Neil Frick, Vice President for Research and Medical Information, National Hemophilia Foundation
·        Chris Guelcher, Nurse Practitioner, Children’s National Medical Center
·        Michelle Witkop, Bleeding Disorders Nurse Practitioner, Northern Regional Bleeding Disorder Center


To view all the videos, visit the Novo Nordisk YouTube Channel <http://www.youtube.com/user/novonordisk/videos> , and please feel free to share them with your friends, family, and organization members!


Great Book I Just Read
The Boys on the Boat by Daniel Jay Brown [Kindle]
 


Incredible true story of underdogs who go to the Olympics:  the University of Washington’s 1936 eight-oar crew, their amazing and youthful coxswain, their aloof but dedicated coach and a legendary boat builder team together for an epic quest for an Olympic gold medal during the 1936 Olympics in Nazi Germany. The story revolves particularly around one boy, Joe Rantz, abandoned entirely by his family during the depression, who has to survive on his own, put himself through college and discovers his calling rowing crew. He seeks to fill a hole in his life, and learns to trust.  He and his team became national heroes at a time when Germany sought to dominate sports, and eventually the world. It's a lesson in human spirit, indomitable will, teamwork, leadership, strategy, family, optimism and hope. Along the lines of Seabiscuit and Unbroken, both of which happened at the same time as this story. Fantastic writing and story! Five/five stars.

1 comment :

Anonymous said...

The sorrow, shame, guilt, regret, etc. of not having been able to keep my family together is almost too much for a man to bear. Hemophilia had a big part in our family troubles. Whatever weaknesses there were in our characters, relationship, and marriage were amplified by the burdens of having a son with hemophilia.

 
Bayer