Month: September 2020

Dear Friends, Family and Supporters of our Cause,

If you are receiving this email or reading this blog, website or tweet, its because you are engaged with us and for that we thank you.

Thank you.

This week marks International Mitochondrial Awareness Week. This week also marks ten years of Miracles for Mito as a nonprofit. Happy ten years to us! Today I was driving into Boulder from Denver. There is a point as you approach Boulder that you can see Long’s Peak, the Flatrions, Twin Peaks….it is really an amazing view.

I reflected on our ten years, Miracles for Mito’s mission to establish a presence in Colorado and felt a little teary. We have lived a lot of life in ten years. We have said goodbye to Littles we loved fiercely, we have raised over $1MM to the Mitochondrial Clinic at Childrens Hospital Colorado and we have established ourselves as a Mito presence on the Front Range.

There is still a lot of work to do. But in 2020, a year for the history books, we have raised $84,000 for our Mitochondrial Clinic at Anschutz campus. This significant, consistent funding has presented multiple opportunities for trials in 2021. The clinic is currently in negotiations for these trials.

In a Spring and Summer of lockdowns, Miracles for Mito shipped Ubiquinol and gift cards across the nation. We now have the bandwidth to ship supplements beyond the Front Range. Please let us know if you know a family that needs help, regardless of their location.

And our amazing nurse MaryBeth Hollinger, provides coast to coast support for Mito families facing the challenge of a rare disease during a pandemic. The support group meetings she conducts twice a week are a cornerstone of support for so many.

Family grants, gift cards, a registered nurse facilitating support group calls, COQ10 for whomever needs it. Miracles for Mito is there for our families.

Is there more to be done? Always.

Do we need your help more than ever? Absolutely.

But just like climbing one of our 14’ers in Colorado, it is one foot in front of the other, every little step makes a difference; tenacity, perseverance with a touch of exhaustion will get us there.  

Thank you for all you do. Please follow us on Facebook and Instagram this week as we celebrate advocacy and awareness. Thank you for ten years. Let’s dare to dream where the next ten will take us: http://www.miraclesformito.org.

Yours for a Cure,

Heather and Maria

I was 30. Before I was married. Before my children. Before I knew the words Mitochondrial Disease.

At 30 I could give you a list of all my worries but looking back, I had a pretty charmed life.

I was consulting for KPMG and I was scheduled to start my new gig on September 11th in Liberty Corner, New Jersey. I flew into Newark the night before, cursed dark New Jersey roads…..why is it so woodsy here????? And reported to my new project at 8:50 on September 11th.

I sat in the lobby waiting for my new manager, sipping my Starbucks, and watching CNN. You know how the rest of the day went.

But it was different because it was close. Liberty Corner is a commuter town. People had loved ones in Tower One and Two. I watched the day unravel. I watched loved ones search for each other, unable to get through, worried and frantic.

At noon they told me I should go home and come back tomorrow. But I had no home. I had room 311 in a boutique hotel of quaint and tiny Liberty Corner. And so I sat and watched and cried and fretted.

I couldn’t fly home for ten days and so I embraced a very sad community. I went to church and prayed. I went to the coffee shop. A firemans boot sat on the counter to collect funds for families. I ate scones, drank lattes, cried some more and tossed dollars into the boot.

On Friday, I went into the city to find solace with dear friends. The subway line under the Towers had just opened. It smelled of burnt oil. Smoke still stood in the subway air. Grand Central was a living Memorial of those missing. I’ve experienced a lot of personal loss in my life. The image of poster after poster of missing loved ones is still crystal clear.

I vote Democrat. I always have. But I was so proud of our republican president. He was strong, uniting, compassionate. For as hard as it was to be so far away from family; I have always been honored to bear witness to the healing of that community.

2,977 souls were lost that day. 19 years later, we honor those lives.

Would we be as good today? As we approach almost 200,000 lives from a pandemic we refused to acknowledge for months, would we be as good? Would we blame each other? Would we turn? Would we unite?

I don’t know that we would unite in the way we did 19 years ago. I can give many examples why I think that but many of you know where I stand on current issues. To say my why would only increase the divide. You know. I know.

It took buildings crashing down for us to unite. 2,977 souls and the ripple in the world that their void left. But it also took empathetic, compassionate rhetoric to reinforce that our neighbor was not to blame, blue or red was not to blame…………It was 19 men following a leader who made it his life’s work to destroy what we believe in.

I traveled often after 911, for a while on a weekly basis. As I took off shoes, belts, endured countless, very ‘personal’ pat downs, I would think about what I heard often in the security line, “Well the terrorists already won.”

I never thought that. I always thought that we all were doing the very best we could to make sure we all got to our places, with our loves, as safely as possible.

I hope we can back there someday. That we all do our very best to make sure we get to our places, with our loves, as safely as possible.

It’s all any of us ever want.

Peace and blessings to you on this day.