Ask Me Why I Run

In the spring of 2011, my cousin’s wife Brenda had a post on Facebook about a group called Angel Runners. It was a group of people who would run races to raise funds and awareness for Angelman Syndrome. The year before, Brenda and my cousin John found out their daughter Kyla had this rare disorder.

What is Angelman Syndrome?

Angelman Syndrome (or AS) is a neurodevelopmental disorder characterized by global developmental delays and severe speech impairment. A few individuals with AS develop functional speech but most communicate through a mixture of gestures, eye gaze, adapted sign language and augmentative communication devices.Individuals with AS have developmental delay and intellectual disabilities. Current research suggests that neuronal development occurs correctly in the brain in AS, but neuronal functioning is impaired. This neuronal impairment impacts the individual’s ability to learn in that skills are acquired less rapidly than in age-matched peers. However AS individuals continue to progress throughout their lifespan, and their ability to learn is greatly enhanced by intensive educational programs, repetition, and environmental enrichment.Individuals with AS have a movement and balance disorder which ranges from mild to severe. While some children with Angelman walk before age 3, most walk much later and some never achieve independent walking. The movement disorder can be mild and only affect gait and hamper some fine motor skills, or severe enough to prevent self-help skills like feeding, walking, and dressing.Most individuals with AS have a seizure disorder which can be difficult to treat. Feeding disorders in infancy are common and some persist throughout childhood. Sleeping difficulties are commonly noted in individuals with AS. Individuals with AS tend to have a happy demeanor, characterized by frequent laughing, smiling and excitability. Many indviduals with AS have an unusual attraction to water and take great pleasure in water based activities like swimming and bathing.

After seeing Brenda’s post about the Angel Runners, I decided to join them. I had a race coming up about a month later and decided to do a fundraiser during the Warrior Dash. Brenda and John brought Kyla and their son Ashton to the race to cheer me on. I had a great time, and ended up raising $373 for AS research.

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Since then, I’ve linked up with Jason Bernstein, who started Angel Runners. His son Reece also has AS. Jason and I have run several races together and raised thousands of dollars for AS research. After our first race together at the Detroit Marathon we decided to begin our quest for 50 marathons in 50 states.

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Finish line photo at the LA Marathon with Jason Bernstein and Mary Fasang.

Comments
  1. e-caminanta says:

    Hi, thanks for stopping at my blog.
    Learned a lot reading this post. Have a nice day!

  2. Thx for following my blog. I’ve read yours and am compelled to follow.

  3. feetusonline says:

    Inspirational. I set up a blog to promote my new business in the UK, but I tip my cap to you for sharing your story. Keep up the fantastic work, and I look forward to reading your future posts. http://www.feetus.co.uk

  4. nimiuh79 says:

    Hi! Thanks for liking my post. That has brought me to your site. I think it’s such a great reason why you run! Looking forward to reading about your other posts.

  5. Hi Tim!
    Thanks for reading my blog….it’s my 2nd one as I am new to the blogging world and still navigating my way around. I love your blog and “why you run”! A happy belated birthday to you by the way! Hope your day yesterday was filled with good times and great friends! I am going to register for your virtual run. Would love to hear more about how you organized it as I’m putting together one right now myself to raise money for our Relay for Life for the American Cancer Society. Best wishes to you!

  6. bellacerroni says:

    Hey Tim!
    I love your blog and enjoyed reading why you run. It’s really inspiring finding others who love to run. I’m new to this blogging website but i’m already in love with it having found a blog like yours sharing stories and passions! I love running and it’s rare to find people who love it just as much. It’s amazing what you’re doing with running, I hope to be able to make a good use out of running one day too and give it more meaning to other peoples lives. Happy belated to you!
    Also, I live in southeastern Michigan as well, hah!

  7. lindsaycolle says:

    Tim- thanks for reading my post on my upcoming races. I wish I could give you some great story about why I run, however my first line would read…I do not like to run. I run because I understand how my body feels after I run, and I LOVE it! It is truly great to feel the blood pumping through my body.

  8. Jim Brennan says:

    You’re a good man. Keep moving forward!

  9. Joy is now says:

    Excellent cause. I had never heard of AS so you have raised awareness already. Good man for your running!

  10. Kristen R. says:

    Thanks for The like — and I love why you run! Great stuff here.

  11. […] growth, seizures and heart rate irregularities. Tim describes the syndrome a little better than me here and I’ll provide more information at the end if you’re […]

  12. nancymn says:

    Thanks for the like on my blog, and good for you for doing this for charity. I do the same. I figure if I am going to be middle-age crazy, it might as well be for a good cause.

  13. What a nice reason to run.

  14. maluhiapt says:

    Thank you for liking my post. I just wanted to say thank you also for being a real human being.

  15. Thanks for stopping at my blog. I really enjoyed reading why you run, very inspirational.

  16. […] Tim’s, the one who put on the Running for Angel’s Race, Blog […]

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