My Perspective: Debbie Dovel

Chad Collage 2Brave Warrior

The day he was born the angels cried,
Knowing what life had in store
For this child God loaned us for a little while,
Twenty-four years and no more.

His name means “brave warrior”
Now, we know we chose it well
He faced every day with courage and a smile,
Getting back up every time that he fell.

We always knew he was too good for this world,
That one day God would call him home
His sweet spirit will forever live in our hearts,
But his body will never grow old.

He loved everyone and he wanted to stay,
Although each year, he lost more & more
He never lost the laughter that brought joy to all
Now he’s walking thru Heaven’s door,

With eyes that are seeing such beauty
And legs that are steady and strong,
He’s walking tall & proud,
Telling his stories to Jesus,
In a voice, now clear and loud.

He loved NASCAR and Junior,
And he was number 88’s biggest fan.
I’ll bet he’s sitting with Dale, Sr.,
In the best seats in the grandstand.

This year, he’ll finally be able to see Daytona
And watch the cars flying by,
Cheering for Junior with passion
From his home in the sky.

God called his name and he left us,
With so many tears to cry
He taught us so much about life,
And his memory will never die.

~Debbie Dovel
2/10/14
In honor of our son, Chad
6/3/89 – 2/9/14

*His favorite NASCAR driver, Dale Earnhardt, Jr., actually won the Daytona 500 race on Feb. 23, 2014, exactly 2 weeks after the day Chad died.

BBDF and Brain Canada Launch New Partnership to Expand Network of Researchers Internationally

Beyond Batten Disease Foundation (BBDF) http://beyondbatten.org and Brain Canada http://braincanada.ca are pleased to announce a new partnership that will hire researchers in Canada to investigate, explore and find a cure for juvenile Batten disease.

The research project is for $1.5 million over three years.  The goal is to further grow the network of international researchers working to find a cure for juvenile Batten Disease.  The deadline to submit a letter of intent is February 9, 2015.

“We are pleased to expand our fight against juvenile Batten disease to experts in Canada to transform juvenile Batten disease research and accelerate our timeline to a cure,” said Danielle M. Kerkovich, PhD, BBDF Principal Scientist.

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My Perspective: Laura King Edwards

Running for Taylor in 50 States: World Rare Disease Day

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day 2014, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

Three weeks from today, I’ll run my second race of 2015 in the great state of Texas: the Woodlands Half Marathon outside of Houston.

I’ll be joined by other runners supporting the Beyond Batten Disease Foundation’s Will Herndon Fund. Together, we’ll mark World Rare Disease Day by honoring millions who, like 11-year-old Will and my sister Taylor, are battling a rare disease.

willDiagnosed with juvenile Batten disease at age 6, Will hopes to learn braille, because he really wants to be able to read. He also wants a guide dog, so he can be more independent. Most important of all, Will dreams of becoming a zookeeper one day. Will would love to rescue and train animals in need.

Taylor and Will haven’t met, but I hear and see a lot of my taylorsister in Will Herndon. Taylor (diagnosed with infantile Batten disease at age 7) worked hard to learn braille after Batten disease stole her vision. She loves animals, and she used to tell me that if she couldn’t be a pop star, she’d love being a veterinarian.

EVERY kid has dreams. And of the 350 million people worldwide fighting a rare disease, 50 percent are children. Most of them are fighting a disease with no treatment or cure (more than 95 percent of rare diseases have not one single FDA-approved treatment).

That’s unacceptable. Luckily, organizations like the Will Herndon Fund, Beyond Batten Disease Foundation and Taylor’s Tale are working hard to build a better tomorrow for kids like Will and Taylor.

I won’t stop running – or fighting – until we do.

Meet Will Herndon

Read more about Laura and Taylor’s story here.