polandsyndrome-music

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MARIO PADOVANI - "Living With Poland Syndrome: Zippers, Snaps and Buttons"

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Poland Syndrome and limb difference advocate, Mario Padovani, performing "Valerie" in tribute to Amy WInehouse.   I hope you enjoy!!!  Peace!!!

MARIO PADOVANI - Valerie (Amy Winehouse cover) (Featuring: Elisabeth Ker…

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MARIO PADOVANI - Valerie (Amy Winehouse cover) (Featuring: Elisabeth Ker...

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Vocalist and Poland Syndrome advocate performing Led Zeppelin’s “Dazed and Confused” with MOTHERSHIP: The Led Zeppelin Tribute Band at JB McGinnes in New Castle, Delaware (USA) on August 23, 2014.

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Musician and Poland Syndrome advocate, Mario Padovani, takes the ALS Icebucket Challenge (August, 20, 2014)

I took the ALS Challenge!!!  Yikes, it was cold!!! :)

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A fantastic video concerning Poland Syndrome which includes excellent advice on managing the aches and pains which often accompany P.S.

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BE THE GOOD

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Thrilled and very grateful to PIP-UK.ORG for sharing out my video on LIVING WITH POLAND SYNDROME on their website! The PARENTS INFORMATION PORTAL (PIP-UK.ORG) is "all about spreading the word on rare syndromes like Poland Syndrome" and they raise money to take away the financial worries for people to seek the best medical care. Thanks so much to the folks at PIP-UK for the work you do and for your ongoing support!!! http://pip-uk.org/poland-syndrome-tin-opener

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I invite everyone to check out and follow my new board on Pinterest with links to videos, articles, books and websites to educate and raise awareness regarding POLAND SYNDROME, to provide inspirational and motivational materials and to spread the message that if you can dream it then it can be done . . . DON'T GIVE UP!!!  Please

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"THE LUCKY FIN SONG" by my friend, Tony Memmel.   50% of proceeds from downloads benefit The Lucky Fin Project, a wonderful organization whose mission is to celebrate, educate, support and unite families and individuals with limb differences! A great tune . . . check it out!!!

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This is the first installment for my new video series, LIVING WITH POLAND SYNDROME.  Poland Syndrome affects me in that I am missing my right pectoral muscle, my right arm is hypoplastic (smaller) and my right hand is uniquely formed.  The purpose of this video series is to demonstrate how I do everyday tasks with a limb difference affecting my arm and hand.  A parent of a child with P.S. recently asked for advice on can openers and I felt this was as good a place to start as any.  I especially hope to reach children with Poland Syndrome or other Limb Differences and instill in them the concept that if you can dream it then you can do it . . . DON'T GIVE UP!!!   Peace and blessings to all!!!

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Hi, my name is Anita. I’m 21 and have CP. One thing that has always troubled me throughout my life is my issues with body image. I grew up in an environment where i was constantly, be it directly or indirectly, told to do things the way others do, sit/look like they do, and appear as “normal” as I could. So I used to hate my body and always tried to hide my deformities by cropping them off in pics or not exposing them at all. When my friends used to tell me about their weight/pimple worries, I would be think “How silly! Compare that with what I’VE got.” Of course i didn’t say it out loud but that’s generally how I felt. Recently, I came across the different Models of Disability and learning that has been a beautiful turn in the right direction. Can you believe it, the first time I completely looked at myself in the mirror naked from head to toe was when I was 20! It’s an ongoing process but now I am largely able to accept myself for who I am no matter what I look like. I hope that every one of us can one day reach that state and simply be FUCKING PROUD OF WHAT WE HAVE and not let others or the media decide for us what is beautiful and what isn’t. It may be slow and painful but in the end its SO MUCH WORTH IT.

Thank you for creating such a wonderful blog.

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My friend who wrote this is an amazing person with a beautiful operatic soprano voice!.   I encourage you to check out her youtube channel at:    https://www.youtube.com/user/FuentesLyudmilla1

Well, let’s start from the very beginning. When I was born I wasn’t just “born”, I was saved. Coming into this world was a miracle for me. You might be asking why. Not only was I born premature and placed in a Siberian orphanage, but I was also blessed with Poland Syndrome. This blessing not...

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Today would have been the 92nd birthday of tenor, Mario Lanza, the man after whom I was named. I first heard this recording of him singing "The Lord's Prayer" when I was 5 years old and when I did my life long love affair with music began. Growing up with Poland Syndrome and Precocious Puberty was no easy challenge. But music was such solace during difficult times and it kept me driven. Listening to Lanza kept me inspired throughout my childhood and still does throughout my adult life. Last night I was invited to do my first gig as a motivational/inspirational speaker some time in April. I'll be sharing about the obstacles I've had to overcome in life and what I've learned. So many new adventures on the horizon these days - so much still to learn, to experience and other mountains to climb and conquer. You can bet I will still be listening to Lanza's voice for ongoing inspiration! Happy birthday to my true idol and musical inspiration!

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Excited!   Received my LUCKY FIN PROJECT bracelet in the mail this week!!!   THE LUCKY FIN PROJECT is a nonprofit organization that exists to raise awareness and celebrate children and individuals born with symbrachydactyly or other limb differences. Please visit their homepage:  www.luckyfinproject.org and please visit their store!  They have some awesome items and for a $10 donation you will receive one Lucky Fin bracelet!