Family Education Event

We are holding our very first Family Education Event

“Having Emergency Plans” – at home and play – at school and work – in travel”

This event will be for all Missouri families affected by rare disease or chronic illness causing special medical needs.

See Below for more information.

MO Education Day – Public Invite

MO Education Day -Exhibitor-Sponsorship Invite

MO Education Day – Sponsorship Guidelines

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

 

 

 

Missouri-Bill Passed-May 2017

SB503 – Allows for Regional Medical Directors to set protocols for those with special medical needs and for paramedics to administer patient carried specialty meds! (It also provides the needed liability protection for our Medical Directors and Paramedics along with other important EMS related issues.

BACKGROUND:
2015- Make correct contacts on the state level and prove real need and gap in coverage.
2016- Attend meetings and assist with developing a good plan for solving the issue.  Original legislation was drafted late in session and didn’t move.  Remainder of year spent perfecting that legislation and spreading awareness of the issue.   Early Filing of HB226 by Rep. Hubrecht in Nov. set us up for success.
2017- January -Started strong with a lunch at the Capitol, followed by personally visiting each office and delivering packets of support documents:  Fact Sheets, Data of types and numbers affected, Organization and Individual letters of support, etc.
Visits, phone calls and emails were consistent with legislators and testifying at 2 Committee Hearings and attending State EMS Day at the Capitol which all secured support of the Bill.
We owe a huge thanks to Rep. Lauer, Sen Hegeman, and Sen. Munzlinger for filing or amending the language onto their Bills and working so hard to see it through.   We also sincerely thank the other legislators who co-sponsored and help support this important legislation!

News Update on 2015 story & House Bill 2665

Our local News channel, KFVS-12, aired an update to the original story of March 2, 2015.  We are so pleased to have their help in raising awareness about the changes happening in Missouri.

KFVS12 – News Update

{Please note a couple errors in the story.  MO is the 2nd state to make efforts to change their protocols.  New York was the first with protocol changes for Bleeding Disorders.  (48 more to go)   —  Should have said “when families can’t administer the meds, the person has to be transported to one of the hospitals in St. Louis or Kansas City.}

News Post 1

Jan 2, 2015 – Wrote to Tila Hubrecht, my newly elected Representative, about the danger in MO for a certain group of individuals with Bleeding Disorders and rare diseases who have to carry their own life-saving medications but can’t have them administered by emergency personnel.

She took action, started making contacts and researching the details surrounding the protocols.