Sunday, March 3, 2013

Rare Disease Week Debrief

I landed back in Seattle on Friday night, did a couple hundred loads of laundry on Saturday, went to a class and to church today, and now have a couple minutes to update you on the events of last week in Washington, DC.

Rare Disease Lobby Day/Week was an amazing experience on a number of different levels:

First, I'd never been to DC, so I was able to visit many of our national monuments, government buildings, and historic landmarks such as the Capitol building, the Smithsonian Museums, the National Cathedral, and the Starbucks in Union Station. Sorry I didn't get a picture of the Starbucks. But they're all the same, so you already know what it looks like.

Second, I learned from Global Genes Project--one of the sponsors of the event--that of the approximately 7,000 rare diseases that exist, there are only treatments for about 400 of them--and no cures. In addition, one in 10 people in our country has a rare disease--30 million people in America, and 350 million worldwide. Sadly, 50% of those with rare diseases are children, and many of them never reach their 5th birthday. Read more here. 

Third, because Rare Disease Lobby Advocates arranged appointments with legislators, I was able to meet with Maria Cantwell, and aides to Rep. Rick Larsen, Rep. Doc Hastings, and Senator Patty Murray. Two fellow Washingtonians, Jason and Andrea--people who suffer from rare diseases themselves--and I walked a gazillion miles on Wednesday as we hiked from one Capitol office building to the next, sharing our stories and the need to fund research at the National Institutes of Health (NIH) for treatments and cures of rare diseases.

Fourth, while telling Annie's story I was able to also highlight the need for Addison's Awareness, and Adrenal Insufficiency United's goal to get emergency medicine "Solu-Cortef" on all ambulances in the nation.

Thankfully--and in answer to your prayers--everyone we spoke to was receptive, and genuinely seemed to want to help. Honestly, with all the meetings these people had that day regarding the sequestration, for them to have any interest at all in what we were saying was an act of God. I was so impressed with the kindness and compassion of the people we met with.

Coincidentally, on the way home I sat on the plane next to a doctor who works with the NIH on funding grants for cancer research. We had a great discussion on what he does, and of course, I told him all about Annie and Addison's Disease. Her little life touches many hearts, even now.

What's next? Well, I'll be following up with my legislators here in our state, to keep Addison's Awareness and the emergency-medicine-on-ambulances goal up front and center. My next post will detail our next project on all that.

Again--thank you all so much for your prayers & support. I was honored to be a part of the important work that Rare Disease Lobby Advocates, Global Genes Project, and my friends at Adrenal Insufficiency United are doing to help people who suffer from rare Annie.



Anonymous said...

What a time to be asking for money from the govt. But then, it's not "their" money it's ours. "They" just manage it.
Ours is not to reason why....

aunt rebecca said...

Amen to Anonymous... and thank you for your update, Jean!! God is at work. As usual.

Jean said...

Thanks for your comments, Anon, and Rebecca. What we can do, and need to do, is vote, create pressure and pray. And not necessarily in that order!

pam said...

Well done, Jean! Those "rare" diseases are not really so rare as we think...discovering more about them all the time...more research, more education, more awareness: that's the key! All of that, of course, covered and surrounded in prayer!