Monday, September 4, 2017

Hope is the Dream of the Waking Man

This is a quote I found on 'the google'. It's a French proverb and I like it.
 
Because what are we if we do not have hope? In the flooded streets of Houston, in the incomprehensible situation unfolding in the Pacific, in the stressful realities of our special needs community, we all need hope.
 
On Thursday we officially finished up another year of riding with the Courage Classic and fundraising for our Mitochondrial Clinic. It was another amazing year.
 
As we finished nine years of riding and six years of funding the Mito Clinic, certain things are starting to happen; really good things. Ideas and projects that only start to come to fruition after years of consistent fundraising and establishing ourselves as a partner in the mito community.
 
And as we finish up another year, I am in awe of a group of people can do.
 
No matter how small.
 
For all of you following, donating, riding, volunteering and supporting us. This is what you have done this year:
 
1. This year Children’s Colorado became a site for an international clinical trial for those with mitochondrial myopathies. We are one of 50 sites internationally. You can access the trial info here: http://www.stealthbt.com/clinical/.


It's a reason to smile :)
 
2. The protocols used by the clinic have  been approved by the Institutional Review Board (IRB) for Mitochondrial Disease. These are all super big words but what it means is that Colorado will become an international hub for research in this field. Our goal moving forward is to establish Children’s Colorado as a Mitochondrial Center of Excellence. This means more research money and support will be funneled into our state.
 
 
One reason why Jim does all of this :)
 
3. Dr. Austin Larson joined us as a fellow in 2014 and is staying on as an Attendee focused on Mitochondrial research, treatment and clinical testing at Children's Hospital . Dr. Larson spoke and met with families this year at the United Mitochondrial Disease conference- we are very excited to have him on board and representing Colorado
 
Cal is THRILLED about this
 
4. We have sponsored a grant between Dr. Larson and Dr. Green to fund a research project looking at the link between mitochondrial deviations and type one diabetes
 
 
Makes Maria smile (Joakim too :)  
 
5. We also supply families in the Rocky Mountain region with supplements not covered by insurance through the Metabolic Food Store at Children’s
 
 
One reason why this beautiful group rides
 
6. We continue to fund the research lab at CU
 
 
 

Six items for our six years. Not too bad.

This team has kept Mito research in Colorado.

This team is what will help continue that research.

I started with a Hope. You all supported a dream. And we kept it a dream in our state. And we continue to support our local families.

You keep me awake.

During the ride, I climbed up Battle Mountain with John Denver in my head, the mountains around me and the lack oxygen in my lungs.

I cry every time I hear Rocky Mountain High. 

And yes, I do realize this might be a character flaw.

I stopped, took in the beauty, wiped my eyes. And thanked God, the universe, my tribe, Samantha and this crazy life for bringing this all into fruition.

And I so leave you with the first verse.

He was born in the summer of his 27th year
Coming home to a place he'd never been before
He left yesterday behind him, you might say he was born again
You might say he found a key for every door


Thank you for helping me find my key :)

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