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Inspirational Neighbor of The Day: Meet 16 Year Old Raena

Raena

I always loved the Mr. Rogers Neighborhood show when his neighbors stopped by, and shared something interesting.

With our Inspirational Neighbor of The Day we want to introduce you to somebody whose story has touched our lives, and want you to meet them.

The person standing next us in the grocery store line could have the greatest untold story, and our neighbors down the street they all have stories.

It’s magical meeting people.

Meet Raena, our Inspirational Neighbor of The Day.

Raena is 16 years old, in school, in yoga teacher training, sites set on College at Stanford, and she is your Inspirational Neighbor of The Day you might not have met yet.

I’ve known Raena’s mom for years, and have always been encouraged by the life she chooses to live.

I’ve been in a yoga class, and vision quest workshop with Raena, and I am always inspired by people who live there lives to the fullest.

Raena, at 16 warrior of life, who lives life to the fullest, pursuing the dreams of her heart.

International Ataxia Awareness Day was September 25, and I had no idea what Friedreich’s Ataxia.

Until I watched the video posted by Raena’s mom, I was unaware of the journey, and the families out there who could use our help trying to raise funds and awareness.

Raena’s dad, Dan, is putting in some serious miles in the upcoming Twin Cities Marathon to help raise awareness and funds for FA.

Here is part of a press release with Dan’s journey:

“My name is Dan Brendtro, and I’ve joined Team FARA in order to cure a rare childhood disease.  With your help, I am raising $26,200 before I run the Oct. 1st ‘Twin Cities Marathon’…that’s $1,000 per mile. The money itself will go toward research…but the fundraising process will show my daughter the enormous size of her fan club.  Please click “Donate Now” button now, or, read on to learn more.

My introduction to Friedreich’s Ataxia came four years ago, when a genetic test confirmed the reason behind my daughter’s balance and coordination issues (at the time, Raena was 12 years old).

Within three weeks, we were on a plane to the Children’s Hospital of Philadelphia to meet with one of the world’s leading FA researchers, Dr. David Lynch. We soaked up everything he told us; we devoured all of the research we could find online and in print; and we heard stories shared by other families.

Here’s what we learned:

  • There is no cure.
  • The disease is caused by a genetic mutation which prevents the body from manufacturing enough of a particular protein (“frataxin” or FXN).
  • This deficiency interferes with the ability of the nerve and heart cells to repair themselves.
  • The disease is very aggressive; the typical progression places children into a wheelchair before the end of high school, and another complication is the teenage onset of heart disease and scoliosis.
  • This disease is associated with early mortality, including taking the lives of FA patients in their 20’s or 30’s (although every patient is different).
  • Research for rare diseases languishes due to a lack of funds, as well as due to a total lack of understanding about those diseases’ mechanisms.  FA affects only 5,000 patients nationwide, so there isn’t a lot of research money available.
  • But FA is different: unlike many rare diseases, the mechanism that causes Raena’s disease was discovered almost 20 years ago, which means we already have a two-decade head start for our daughter’s cure.

My goal is for my daughter to walk across the stage to accept her college diploma in 2022 without the need for any mobility assistance.  And that will require a cure in the next six years.

In service of that audacious goal, I am running the Twin Cities Marathon on 10/1/17, and I am committed to raising the equally audacious amount of $1,000 per mile, for my 26.2 miles…..that means I am raising $26,200 in two weeks.  I want “my” 26.2 miles to become my daughter’s 26.2 miles.  Please join me to support the urgent pace of this research.”

To donate and read the entire story click here.

Take some time getting to know people, and their stories, we never know what we will find when we listen.

It’s magical meeting people.

Meet Raena, our Inspirational Neighbor of The Day.

Raena


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