TX – The Team is Forming

  • We have connected with several families ready to work on protocol changes
  • We have 2, very motivated board members from Texas
  • We are trying to connect with more rare disease and chronic illness organizations in the state
  • State EMS regulators are of the opinion there’s not really a problem due to a “white paper” written back in 2010
  • We do have some connections made with state or district EMS personnel
  • WE NEED A TEAM FORMED!  We need to start gathering data on events that have happened and call a majority of services to determine the actual protocols and beliefs of how they are allowed to treat.  —  Click the “JOIN THE TEAM” link to join the efforts or get more information.

OR- Adrenal Insufficiency United has been working for 4 years

Jennifer Knapp, Director, of A.I. United and her Board and many families started working on protocol changes for 4 years.   They got legislation for EMS protocol changes but met a lot of opposition from the state EMS association.

From that point, they have revised their plan of action and have support from several Senators for legislation for a medical ORDERS database.  Unfortunately the legislation did not move in the 2017 session.

We are now looking at trying to reach the state EMS association again with the help of the supportive legislators to help them realize the extent of the need for protection.    Best case scenario would be for the realization to come to the state association and protocols changed without additional legislation.

With all this said, this will only happen with the voices of many affected families requiring protection for their loved ones!   To join in the efforts or just be updated, click the menu link “Join The Team” and you will be added to our database.

Adrenal Insufficiency United – ORDERS facebook page

MN- Things are really moving!

  • A group of ladies have really made progress!
    • Connecting with other parents
    • Connecting with local and state level EMS
    • Connecting with a Dept of Health representative
    • Connecting with their state representative
  • Legislation was filed in late 2016 but didn’t move
    • Refilling in 2018 is currently planned
    • Awareness and support need to be raised
    • We are currently planning a “round-table” type discussion with the state level interested parties and interested families.   To join the MN Team or just get more information, click the “Join the Team” menu link to contact us.

FL – Team is being created

  • We have connected with several families already working on protocol changes
  • We are trying to connect with more rare disease and chronic illness organizations
  • State regulators are of the opinion there’s not really a problem and we should just contact every single EMS service.
  • WE NEED A TEAM FORMED!  We need to start gathering data on events that have happened and call a majority of services to determine the actual protocols and beliefs of how they are allowed to treat.  —  Click the “JOIN THE TEAM” link to join the team or get more information.

 

Blogs, News Stories & Articles

BLOG:   Hemohelper blog   – by Joslyn Kelly

ARTICLES:

HBDA Article – Danny’s Dose-2015  –  for Alabama Chapter Newsletter

Coalition-Winter Newsletter-pg 20 –  2016 for The Coalition for Hemophilia B

Coalition Mag-2017 Article -with hero pic – for The Coalition for Hemophilia B

EMS World -Special Protocols – by Mike Ruben

Daily Statesman-Pg 1-Feb, 2017Daily Statesman-Pg 2- Feb 2017– by Noreen Hyslop

NEWS STORIES:

KFVS-12 Story- Mar, 2015

2nd Story-KFVS-12 -Mar, 2016

KOMU News Story – Feb, 2017

KFVS-12 Story on the MO Bill Signing – July, 2017