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 Friday Friends

Spotlight on Dave Steele

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What a treat you’re in for today!

Meet Dave Steele and his family. Dave’s the big guy with the grin on his face. But he wasn’t always smiling. It’s not easy when you’re going blind. But now Dave has found a new “focus,” and that’s getting the word out about Retinitis Pigmentosa (RP).  Read on to learn more about Dave!

Dave and his family
Dave and his family

Our guest is a husband and a father, a world traveler, a talented poet and a professional singer on a mission. He’s here to get the word out about RP (Retinitis Pigmentosa), which he, too, suffers from. As an entertainer, songwriting (or adapting songs) is a natural vehicle for him.

Dave, born and raised in the UK,  has been profoundly affected by his RP. Although he had known it was in the family since he was a kid, it didn’t affect his life until he was thirty-nine, when he ebxperienced a huge drop in vision. Make sure to read Dave’s story, in which he shares the dramatic highs and lows he experienced, especially at the hands of this inherited disease. It also explains how this performer came to write his theme song, “Stand  Be Me RP,”which he’s using to get he word out about RP and  Usher’s Syndromea related disease. In his version, spun off from the original Stand by Me, the lyrics express the fears many suffer from losing vision.

You can see Dave performing his theme song in this video.

This song is impacting listeners! Dave says, “Music is a simple way of getting the message out there so everyone can understand,” and adds that it’s been played on the radio in Spain, Hungary, Japan, Canada and even Sweden. He’s even had feedback from New Zealand and Australia. He’s amazed that a simple idea can spread so far. Do we have readers from other countries? Where ever you live, please share this song. People all over the world who suffer from this want change.

Dave and I both have RP. We represent the 1 in 100,000 that inherit this eye disease and will go blind. In addition, I have Usher’s Syndrome (which, as you just read, includes progressive hearing loss).  Help us get the word out about these diseases. We want others to know and understand. So like, Share, Tweet, Google+, and whatever else you can do to pass the word on in your communities.

I mentioned earlier that not only does Dave sing, he also writes poetry. This is a sample of one of his poems.  Does it help you understand what he feels? What I feel? I sure hope so!

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Come hold my hand as we stumble in to the darkness,
walk by my side as the world disappears.
Help me see what’s left can still be cherished,
take my mind off all that’s to be feared.
Let my voice be the light to help to guide you,

hear my song when the fog fills your eyes.
Feel my words on the days you need to feel them,
be my strength on the days I can’t be yours.
Get me out in to the world I don’t feel part of,
say I’m wrong to feel that I’m alone.
Close your eyes and imagine they’ll never open,

learn to walk in a new way from before.
Know there’s strength in us all we need reminding,

Call me friend when there’s laughter when there’s tears.
© Dave Steele

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Dave singing to spread the message
Dave singing to spread the message
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If you’d like to read more of Amy’s writing, check out her memoir, Mobility Matters: Stepping Out in Faith found on Createspace, Amazon anad Amy’s website.
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Amy

Amy Bovaird is the author of two best-selling books Mobility Matters and Cane Confessions: The Lighter Side to Mobility.  An accomplished and inspirational speaker, she talks on a variety of topics based on her life experiences and continues to educate and inspire others through her writing and speaking. She lives with a dual disability—progressive vision and hearing loss due to Usher Syndrome. She blogs about the challenges she faces as she loses more vision and hearing and manages to find humor around almost every corner, AmyBovaird.com. Her books are available at Amazon. Follow her on social media at Amy Bovaird, Author.
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“Stand by Me RP”

15 thoughts on ““Stand by Me RP”

  • January 23, 2015 at 4:47 pm
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    Thank you, Paulette! I, too, have RP like Dave. =)
    So glad you liked the poem! Thanks for sharing the video, too!
    Amy

  • January 23, 2015 at 4:50 pm
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    You’re welcome, Joan.
    Hope you shared it too!
    Amy

  • January 23, 2015 at 5:45 pm
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    Thank you for taking the time to share my story and words, it’s so important for me to help spread awareness for RP and Ushers as they are what is called invisible disabilities, with the sufferers often questioned that they don’t look blind which can lead to anxiety in continuing to be independent. I for one really struggle seeing my vision and families faces disappearing as each day, week and month go by. Please share share and share again.
    Thanks Dave xxx

  • January 23, 2015 at 5:46 pm
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    Hi Amalia,
    Thanks! I hope you’ll join me in sharing it! 😀
    Amy

  • January 23, 2015 at 6:44 pm
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    Wow! What a story to tell. I’m happy to share your post on social media and will do so today in honor of you and Dave both. I cannot imagine having both diseases, but if I did, I would work and live like I didn’t have it. I know there are limitations, but I would do whatever I could do. Prayers to you both! 🙂
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  • January 23, 2015 at 7:06 pm
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    Thank you so much, Aletha!
    Your help is really encouraging!
    Amy

  • January 23, 2015 at 9:20 pm
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    Hi Amy,

    What a great advocate you found for RP! I loved the song and the poetry. Have you ever noticed that there seems to be a high percentage of talent among people with RP? Every day I find someone with this disease who is making a creative impact. Together everyone can make a difference.

  • January 23, 2015 at 10:30 pm
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    Hi Matt,
    Yes, that’s right. Very creative.
    I love the song too! I am going to do another guest spot (I hope) on a British woman who I will not name yet.
    (I know your curiosity and you will look her up ahead of time!) ;D ha ha!
    Amy

  • January 24, 2015 at 3:57 am
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    Hi Dave,
    Thanks for putting yourself out there with your “Stand By Me RP” song. Wishing you much success and will be waiting for your next announcement about the new song coming out. Keep moving forward, friend! Looking forward to hearing more about your music at Joanne’s launch in May as well. Good things are ahead for you and your family! Keep the fight!
    Amy

  • January 24, 2015 at 2:19 pm
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    I too have RP and loved the song. It made me cry. I would love to have it as my ring tone and I think many others like us would too. Any way you could set that up. I would be happy to pay for it and maybe that could raise some funds for awareness. Thank you

  • January 24, 2015 at 7:18 pm
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    Hi Peggy,
    Glad you liked the song! What a great idea. I think I’d like it to as my ringtone, too! Let’s see what we can do. I will definitely pass your message on to Dave!
    Amy

  • January 24, 2015 at 7:32 pm
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    Hi Peggy,
    Thanks for your wonderful comments on the song. Unfortunately due to copyright laws I am unable to to a ringtone at the moment but if things change you will be first to know. Please keep sharing the video to create the awareness we need to reach a wider audience.
    Thanks Dave xx

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