Last Fall, I became aware of a remarkable young man named Sam Berns. Sam was a junior at Foxboro High School, loved Legos, loved playing drums in his high school marching band and wanted to be a scientist when he grew up. Sam also suffered from a rare disease known as Progeria. But to see him, the word "suffer" would never even have entered your mind - facing his fatal disease with a strength and wisdom few adults will ever know.
In the HBO Documentary Life According to Sam his first words to us all were, "I didn't put myself in front of you so you could feel bad for me; I put myself in front of you to let you know you don't have to feel bad for me." I watched the whole documentary with my wife. We both cried and hugged and thanked God all our children were healthy. Afterwards, I couldn't stop thinking about how brave he was and how strong his parents (both doctors trying to find a cure) were through all of this. And, I vowed to do something to help.
Late last week Sam died. He was just 17 years old.
This week, I followed through on my promise and set up a fundraising website to benefit the Progeria Research Foundation called 100 Miles For Sam. I'll be running a 100 Mile trail race later this year and I will be raising money for PRF (and hopefully awareness about Progeria) with every mile I run. However, the more I think about it, the more I realize that it's not really "100 Miles FOR Sam", but rather "100 Miles FROM Sam", because it was FROM his courage and spirit that this run was born.
Who it's FOR is the hundreds of children still dealing with Progeria and for their families, that they may know there are people who care about what they're going through. It's also FOR the amazing doctors and scientists working for the Progeria Research Foundation, that they may have the funding to keep fighting the good fight. And, lastly, it's FOR me, that I may be inspired to complete my 100 mile journey and add meaning to my running by giving back to the community. So, thank you Sam!
Below is some more information about Sam, Progeria, PRF and what you can do to help. And, if so inclined, there is also a link for you to donate to PRF via my 100 Miles for Sam fundraising site.
In the HBO Documentary Life According to Sam his first words to us all were, "I didn't put myself in front of you so you could feel bad for me; I put myself in front of you to let you know you don't have to feel bad for me." I watched the whole documentary with my wife. We both cried and hugged and thanked God all our children were healthy. Afterwards, I couldn't stop thinking about how brave he was and how strong his parents (both doctors trying to find a cure) were through all of this. And, I vowed to do something to help.
Late last week Sam died. He was just 17 years old.
This week, I followed through on my promise and set up a fundraising website to benefit the Progeria Research Foundation called 100 Miles For Sam. I'll be running a 100 Mile trail race later this year and I will be raising money for PRF (and hopefully awareness about Progeria) with every mile I run. However, the more I think about it, the more I realize that it's not really "100 Miles FOR Sam", but rather "100 Miles FROM Sam", because it was FROM his courage and spirit that this run was born.
Who it's FOR is the hundreds of children still dealing with Progeria and for their families, that they may know there are people who care about what they're going through. It's also FOR the amazing doctors and scientists working for the Progeria Research Foundation, that they may have the funding to keep fighting the good fight. And, lastly, it's FOR me, that I may be inspired to complete my 100 mile journey and add meaning to my running by giving back to the community. So, thank you Sam!
Below is some more information about Sam, Progeria, PRF and what you can do to help. And, if so inclined, there is also a link for you to donate to PRF via my 100 Miles for Sam fundraising site.
Who was Sam Berns?Sam was born in 1996 and was diagnosed with Progeria just before he turned two. He was not expected to live past age 13, but did so, and then some! He was a lovable and quick-witted young man who loved to play drums and became the public face of this rare disease. His courage and spirit moved everyone who came to know him personally or was inspired by his story.
Sam shared his 3-part life philosophy at TEDxMidAtlantic this past October - “1. Be OK with what you can’t do, because there is so much you CAN do! 2. Surround yourself with people you want to be around. 3. Keep moving forward!” ~ Sam Berns.
What is Progeria?
Hutchinson-Gilford Progeria Syndrome is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Although they are born looking healthy, children with Progeria begin to display many characteristics of accelerated aging at around 18-24 months of age. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, cardiovascular disease and stroke. Children with Progeria typically die of heart disease at an average age of thirteen years.
What does the Progeria Research Foundation do?Located in Peabody, MA, the Progeria Research Foundation (PRF) was established in 1999 by Dr’s Leslie Gordon and Scott Berns, the parents of Sam Berns. The Berns’, along with many dedicated friends and family saw the need for a medical research resource for the doctors, patients, and families of those with Progeria. Since that time, PRF has been the driving force behind the Progeria gene discovery and the first-ever Progeria drug treatment. PRF has developed programs and services to aid those affected by Progeria and the scientists that conduct Progeria research. Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria.
What’s happening in Progeria Research?
In 2012, the results of the first-ever clinical drug trial for children with Progeria revealed that Lonafarnib, a type of inhibitor originally developed to treat cancer, has proven effective for Progeria. Every child showing improvement in one or more of four ways: gaining additional weight, better hearing, improved bone structure and/or, most importantly, increased flexibility of blood vessels. The study was funded and coordinated by The Progeria Research Foundation. From an obscure, ignored disease to treatment and global recognition in just 13 years – an unheard of timeline in the world of medical research!
You are the driving force behind PRF’s ability to fund research and educate the families, their doctors and the general public. With your help, PRF can achieve new heights and envision a better future for children with Progeria. Although great strides have been made in an incredibly short amount of time, there is still much work that needs to be done before an ultimate cure for Progeria can be found. You can help in any number of ways on the PRF website HERE.
What am I doing?
I’ll be running the Ghost Train 100 Mile Trail Race (my first hundred!) on October 25th, 2014. I will be raising money for PRF and hopefully awareness about Progeria with every mile I run. I know that running 100 miles isn't going to be easy, but with the right training, your support and courage of the amazing children still suffering from Progeria motivating me with every step, I know I can do it! Please help support me by donating what you can - either a fixed amount, or a so much per mile I run.
You can help by donating - via my 100 Miles for Sam fundraising event HERE.
Thanks, and like Sam said, “Keep Moving Forward!”
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