Danny’s Dose in the News

Danny’s Dose made some headlines recently, check it out!

The Shelton family found this out through another’s story. The Shelton’s have a son named Danny, who was diagnosed with severe hemophilia before he was a year old. They prepared as much as they could to make sure he would be safe wherever he was, whatever the circumstances.

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Also from the LA Kelley Communications, Inc February Quarterly newsletter of “PEN”.

Lobbying for Specialized Emergency Treatment

Darlene Shelton founded Danny’s Dose Alliance after her ten-month old grandson was diagnosed with hemophilia. Although Danny always had his factor with him wherever he went, Darlene’s family learned that paramedics and ER workers were not allowed to administer the factor due to conflicting treatment protocols and liability fears. So Darlene sprang to action and formed Danny’s Dose with these goals in mind: (1) Raise awareness about the current gap in emergency treatment for people with rare diseases, chronic illnesses, and special medical needs; and see current protocols amended. (2) Assist with specialized education for EMS and ER personnel. (3) Provide education for affected families on how to better advocate for their treatment needs. The organization’s first goal was to amend protocols in the Sheltons’ home state of Missouri within two years. Darlene says, “Goals can be lofty, but I believe if you don’t set goals high, it removes some of the urgency.” After their proposed legislation was passed in Missouri, Darlene looked forward to their next goal. “We passed EMS legislation, assisted with the beginning of paramedic education, and are helping that grow in 2018 and beyond. Of course, we can’t be sure we will meet our five-year goal, but it looks promising, and we are determined to push hard.” Darlene hopes to have improved treatment protocols for ER and EMS in place across the entire US within five years of their first state, Missouri. The work of Danny’s Dose doesn’t just benefit people with hemophilia. “It benefits all individuals with special medical needs,” says Darlene, “covering rare disease and chronic illness. This covers those with rare, lifesaving meds.”

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.