Support for Those Living with Adrenal Insufficiency

Adrenal Insufficiency United and First Responders: Creating Awareness to Save Lives

Adrenal Insufficiency United and First Responders: Creating Awareness to Save Lives

AIU attended the EMS Conference in Denver, CO back in May of 2012.

Fire Rescue International attendees heard us call out…..”Can we share some information that could save a life?”

IMG_0183Of all the opening lines, this one caused most every one to stop and look and by the end of the conference we’d handed out almost 900 CDs.  As always the Firefighters themselves came over right away with expectant looks, smiles and open minds.  They were happy and thankful to hear what we had to say.  A few took more than one CD so they could share them with their fellow fire fighters unable to attend the conference or to pass them on to their head trainers.

Since the conference exhibitors included a majority of businesses selling something, fire chiefs while a little harder to lure over.  However once they realized our purpose was not to sell, but to provide free information, they were very receptive.  Many of the department fire chiefs we spoke to have online documents available to their staff for training.  By providing them with the CD we’ve given them valuable documents to add to their training and we are excited about that!

Many chiefs took enough CD’s to give one to each of their stations.

We want to thank those of you who helped send out emails before the conference.  Several people were actually seeking us out which was a great feeling.  Our thanks also goes out to NADF who helped us promote Dusty’s run for AI awareness and raise funds to attend this conference.  They also sent 8’ x 10’ posters with signs symptoms and treatment information which were a wonderful addition to our CD and brochures.  Charla who has Addison’s and is the NADF support leader for CO helped a great deal.  All of our packages were mailed to her and she picked me up from the airport, helped to set up the booth, then came back the next day to help.  Andrew, who has AI joined us on Friday and shared his personal experiences with those who stopped by the booth.  As a twin, he was also able to share the experiences of his brother. Having two adults with AI who were able to have face to face conversations about their experiences with Adrenal Crisis was powerful.

Saturday, parents and children ran the booth.  Amanda and John with son Gio (who has AI) and nephew Dylan joined me.  Gio, who stood about as high as the table yelled out “people people” and held the CDs out with his little hands.  Who could resist!  Dylan, older and more aware and nervous about asking an unfamiliar adult to take a CD faced his fear and stood by his cousin.  I loved seeing these boys together!  Since Saturday was a little slower Amanda, John, and I were able to see some of the other exhibitors and get some CDs to them.  Great contacts were made with magazine editors, the 911 system, EMS associations, and other exhibitors.  We will be submitting articles, blogs, and proposals in the near future.

So what were these CDs all about?

By compiling data from several physicians, organizations and EMS departments we were able to create a CD full of information about Adrenal Insufficiency.  This information included:
Our digital booklet “Adrenal Insufficiency and Emergency Care” converted into a pdf
A full EMS powerpoint training created from MA EMS for Children
Protocols from several EMS departments from around the Country
Case studies representing several AI conditions and age groups
Letters of support outlining the need for protocols from AIU, CAH IS US, Magic, NADF, and CARES
The powerful pathway created by Prof. Hindmarsh and CAH IS US

Since we first created these CDs we’ve now been able to make everything on them and more available through free downloads.

We are also able to send info packs out to EMS and ER directors as well as School Nurses.  Our ability to send these free packs is  due to the generous donations of our supporting members.  Please consider a contribution to help cover the cost of the kits you have us send. Just $5 covers our cost.

Together we’ll make some great changes!

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