Tuesday, February 19, 2013

Rare Disease Week--February 25-March 1st, 2013

Two of my Adrenal Insufficiency United compadres, Kimberly Doran & Kirsten Norgaard, and I are going to Washington, DC for Rare Disease Conference and Lobby Day. We were together last year in May at a Fire & Emergency Medical Services conference in Las Vegas, highlighting the need to have emergency medicine for AI on board all ambulances. Our message will be the same in Washington: help us put national protocols in place to train medics about AI, and have Solu-Cortef on every ambulance in the United States.

I will also have the opportunity to share Annie's story and the need for Adrenal Insufficiency Awareness to legislators from our state. RDLA is organizing this--which is great, because Maria Cantwell would probably hang up the phone if I called her--we're just not that close. Actually, I don't know who all we'll be meeting with, but whoever they are, they'll be more people who know about Annie, and more who will become aware of Adrenal Insufficiency. And--our meetings will provide a much-needed break for them from the sequestering drama. Which, by the way, does have an impact on issues relating to rare diseases...but I digress.

Then on Thursday, we'll go over to the National Institutes of Health for their Rare Disease Day events.  So--lots of things to learn, and lots of people to hear Annie's story. Please pray that we meet with whom we need to meet, say what we need to say, and that God maximizes the impact of the events of the week for the common good of all the people who deal with difficult health challenges.

Thank you so much, and I'll keep you posted as things unfold.


Open your mouth for the speechless, in the cause of all who are appointed to die.
Open your mouth, judge righteously, and plead the cause of the poor and needy. Proverbs 31:7-9


Kathy Day said...

I will pray for this trip and for you Jean!

Jean said...

Thanks, Kathy!

aunt rebecca said...

Prayers are already in flight - have an absolutely GOD-AWESOME week!!

Anonymous said...

How wonderful!

Praying for you always,

Terri W

Anonymous said...

Thanks for continuing to be a crusader for all children affected with AI and specifically Addison's Disease. Two of my granddaughters, Olivia and Kinsley, have Addison's. Olivia had a life-threatening crisis in January 2007 when she was 15 months old (same day as your Annie's)and was not diagnosed until she was 3 1/2. During those two years, she was hospitalized many times and Addison's was not diagnosed. Her little sister had a near death crisis when she was only 7 months old. Luckily, she was being treated in the ER when she coded and they resusitated her without permanent damage. Both girls will take hydrocortisone for the rest of their lives. My daughter carries the solucortef and syringes in case of crisis. We have spoken to local fire departments about AI and the need for 1st responders to carry solucortef. We shared Annnie's story and brought pink cupcakes to the fire station last year.
Thank you for all you do to raise awareness. Thank you Annie for being a beautiful guardian angel!
Gratefully, Mema