Month: July 2019

blog, home, Life Today, Life Today 2015 to Present

Do You Hear the People Sing?

Hschichie

It’s Friday evening.

I’m always hesitant to post on Friday. It reveals the fact that I’m not out at a hip bar drinking appletini’s but instead sitting in my study contemplating the meaning of life.

Alas, I am a tad nerdy.

But also tonight mind and body demand a little downtime. A little time to think about how amazing the last week has been and everything we have accomplished.

Last weekend our Summit for Samantha team of 61 riders rode over 130 miles and raised almost $130,000 for mitochondrial research here in Colorado. In our ten years as a tenacious team, we have raised a cumulative $893,000 for our mito clinic.

Next year I’m calling a million. A million dollars for mitochondrial disease.

I would be lying if I said this week doesn’t knock me on my hiney. I have gone radio silent on my team. It took me three days to unload my car. I am now staring at a pile of stinky rider gear in my study.

Stinky.

But my goodness, its awesome. And my goodness, I am so proud of what every, single, person has done to raise this team up into the ten year success it is. We are number 5 in overall fundraising for the ride; number five with teams raising awareness for cancer research, heart defects and overall hospital support. These are known, important causes that are easy to rally behind because the general population knows about them. Here we are, number five for mitochondrial disease. Mito-what-drial?

This is not an easy ride. Vail Pass after 60 miles of riding is brutal; your head plays games and your legs plead for you to stop. I turned on my Pandora about two miles from the top. The station queue’d was Hamilton but a song from Les Miserables was playing…..

Do you hear the people sing?
Singing the songs of angry men?
It is the music of the people
Who will not be slaves again!
When the beating of your heart
Echoes the beating of the drums
There is a life about to start
When tomorrow comes!

I pushed along to the cadence but thinking to myself, I’m not angry.

But then my other self called bullshit on that and declared I clearly had too many shot blocks.

Of course there are times when I’m angry. When we should not have to raise money for mitochondrial disease. When I should not know so many who have lost their Littles.

And when I realized that, climbing up Vail Pass, the beating of my heart echoed the beating of the drums…..

And I started to cry.

Two miles from the top of Vail Pass on your bike is a really awful place to cry. I told myself this but myself does not listen and started to cry harder; snot, sweat and tears.

This year we arranged for a beer stop at the top of Vail Pass because, well, beer. My friend Paula coordinated the stop, rallied volunteers and dressed as a giant banana to keep us going.

No really. A banana.

As I got to the top, I was greeted by my team chanting “Heather! Heather! Heather!” I was handed a cold Summer Shandy, a Kleenex and felt the relief that all I had to do was ride down into Copper.

How can I possibly be angry?

You all make it IMPOSSIBLE for me to be angry.

And not that it does not well up at times. And not that I don’t ugly cry at times. But I’ll tell ya, 61 riders, $130,000, a Summer Shandy and a dancing banana…..ya’ll are good people.

Thank you for another amazing year.

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Letter to my team about your money

Hschichie

Hello Very Best Donors!

This is the time of year when I un-apologetically ask you for donations to my bike ride. I thank you for listening, donating, supporting, cheering. Y’all are awesome.

This is our tenth year riding. I am amazed by what this team has accomplished. They have changed how we diagnose and treat mitochondrial disease in the Rocky Mountain area. I not only ask this group to ride 150 miles up three mountain passes, I ask that they raise over $500. Here is my letter to my team about what they support and the very important work they do.

You can support them here:

Hello Very Best Team!

I hope you stayed dry and managed to find a break in the weather. The clouds made me extraordinarily lazy. I made soup.

A couple of you have asked what is new in the clinic. Since you are fundraising for the clinic, this is an great question and one that I hope I can answer in a couple paragraphs.

Those who have ridden with us know these facts:

  1. We are the only mitochondrial clinic serving the Rocky Mountain area. Our team has been the sole supporter of that clinic
  2. We were part of an international clinical trial. One of 33 sites worldwide. This is a phase three trial that should get FDA approval by the end of the year
  3. Our clinic sees both children and adults in the area
  4. We provide ubiquinol, a supplement not covered by insurance, free of charge to families being seen by Children’s
  5. We recently became part of the Mitochondrial network of care. There are 23 sites nationwide, only 8 west of the Mississippi

This is all because of this team and their fundraising efforts.

But here is what your amazing researchers are doing in the lab. Our team has been focused on diagnosing and finding potential therapies by working with skin cells.

Skin cells? Why skin cells?

Mitochondrial thrive in organs that are tough to get to; the brain, the heart, the liver, muscle. Many times a mito diagnosis had to be from a muscle or liver biopsy which is very evasive especially for our medically fragile population. These cells are finicky, hard to keep alive in a laboratory and are of limited supply. Skin cells however are everywhere! I think I just shed some right now! I know, ew but you get the picture and why we would want to work with a more user-friendly cell.

When a suspected mito patient comes to Children’s, a non-painful skin biopsy is taken and researched in  our lab. Our researchers are now pros at creating an environment where the mitochondria in the skin cells are ‘stressed’; usually by monitoring oxygen intake. From that point, they can look at where in respiratory chain does the breakdown happen, which makes diagnosis faster.

What is even more promising; from that methodology, the team can try potential treatments to see how the mitochondria react. This research is getting international attention. Dr. VanHove found a series of genes that react and respond positively to amino acid therapy. You can access the article here. Please note the reference to our bike team at the end:  https://eurekalert.org/pub_releases/2018-10/uoca-cas100318.php

I know this is a lot to put into a fundraising letter. I might just tell your donors that they are supporting international break through research…..and mean it….100%

I hope this helps! You are all making a difference.

Happy Sunday!

Heather

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June 30

Hschichie

Sigh.

Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not.

I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes, but I knew him. And I love him. And he demands his day.

Fourteen years

That’s a lot of life.

And yet the timing of that day passes through me every year……..the minute I sat in the waiting room, the second I found out, the moment I called Hubs.

I hesitate to post about Jack because it is so very sad. Nothing is more devastating than a silent delivery room.

Tomorrow we will toast to our First. I will place the frog ring on the creme’ brulee. The waiter will ask what we are celebrating and we will awkwardly look at each other and come up with a lame answer.

But to tonight I will miss a person who should have been here.

Life Today 2015 to Present

June 30

Hschichie

Sigh.

Today just cannot pass without talking about it. I feel it in my energy. I feel it in the way Hubs and I move around each other. We are sad. Today should be different but it’s not.

I hesitate posting about Jack. I never heard him cry, never knew the color of his eyes, but I knew him. And I love him. And he demands his day.

Fourteen years

That’s a lot of life.

And yet the timing of that day passes through me every year……..the minute I sat in the waiting room, the second I found out, the moment I called Hubs.

I hesitate to post about Jack because it is so very sad. Nothing is more devastating than a silent delivery room.

Tomorrow we will toast to our First. I will place the frog ring on the creme’ brulee. The waiter will ask what we are celebrating and we will awkwardly look at each other and come up with a lame answer.

But to tonight I will miss a person who should have been here.