SOPHIASCURE.ORG

Sophia's Cure Foundation

It has been a long time since I posted.I personally have been sitting back absorbing current events… read more. A Day For Avery……. Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati,… read more. UFC vs SMA Fight Night 1/31/15. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in… read more. A Night For a Cure. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. We are proud ...

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Sophia's Cure Foundation | sophiascure.org Reviews

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It has been a long time since I posted.I personally have been sitting back absorbing current events… read more. A Day For Avery……. Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati,… read more. UFC vs SMA Fight Night 1/31/15. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in… read more. A Night For a Cure. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. We are proud ...

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Sophia's Cure Foundation | sophiascure.org Reviews

https://sophiascure.org

It has been a long time since I posted.I personally have been sitting back absorbing current events… read more. A Day For Avery……. Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati,… read more. UFC vs SMA Fight Night 1/31/15. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in… read more. A Night For a Cure. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. We are proud ...

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sophiascure.org

1

UFC vs SMA Fight Night 1/31/15 | Sophia's Cure Foundation

http://www.sophiascure.org/blog/ufc-vs-sma-fight-night-13115

You are here: Home. UFC vs SMA Fight Night 1/31/15. UFC vs SMA Fight Night 1/31/15. January 18, 2015. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island. In New Hyde Park NY on January 31, 2015. UFC Gym Long Island. Is teaming up with SCF to “FIGHT SMA”! Coach Tommy vs Coach Mike P. Coach NJ vs Coach Kevin. Coach Carisa vs Amanda. Coach Erik vs coach John J. Coach Anthony vs coach AJ. If you cannot make it, please donate here so your donation can be MATCHED!

2

Sophia’s Journey | Sophia's Cure Foundation

http://www.sophiascure.org/category/blog

You are here: Home. Archives for Sophia's Journey. February 2, 2015. Filed Under: Sophia's Journey. UFC vs SMA Fight Night 1/31/15. January 18, 2015. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in New Hyde Park NY on January 31, 2015. UFC Gym Long Island is teaming up with SCF to "FIGHT SMA"! Filed Under: Sophia's Journey. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. June 18, 2014. We were so honored to watch histo...

3

Tap Out SMA | Sophia's Cure Foundation

http://www.sophiascure.org/blog/tap-out-sma

You are here: Home. February 2, 2015. It has been a long time since I posted…….I personally have been sitting back absorbing current events in the SMA community and sometimes that leads to stagnation. As a family we continue to move on….focusing on today….cherishing the moments….living in the here and now. I cannot speak enough about his coaches. They care about their students and have gone above and beyond in their tutelage Jackson. Coach Mike (Purple Belt Mike in Jackson’s Book) really poured his...

4

Donate Now | Sophia's Cure Foundation

http://www.sophiascure.org/donate

You are here: Home. Sophia’s Cure Foundation. Is a non-profit 501(c)(3) public charity. As such, all donations are tax deductible to the fullest extent allowed by the law. Our tax I.D. number is 26-4805139. To Donate by Check:. Please make checks payable to. Sophia’s Cure Foundation. PO Box 601, North Bellmore, NY 11710. Be Informed. Stay Connected! More Ways to Get Involved. We are dedicated to helping SMA families and strive to further increase SMA awareness.

5

First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy.. | Sophia's Cure Foundation

http://www.sophiascure.org/blog/first-child-with-spinal-muscular-atrophy-has-been-injected-with-aav9-gene-therapy

You are here: Home. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. June 18, 2014. We are proud to announce that the first child in the Gene Therapy Program was injected just over 30 days ago. Sophia’s Cure Foundation was present for this monumental day. We are looking forward to more children receiving this treatment in the near future. Thank you to Nationwide and AveXis.

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averycan.blogspot.com

Avery's Bucket List: Dr. Kaspar's Clinical Trial is Now Open for Enrollment!

http://averycan.blogspot.com/2014/04/dr-kaspars-clinical-trial-is-now-open.html

Imagine youve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, Im almost 5 months old, and this has become my reality. But before I die, theres a few things Id like to accomplish.this is my bucket list and my story. SHARE IT and HELP ME TELL THE WORLD ABOUT SMA! Friday, April 25, 2014. To learn more about SMA or to make a...

averycan.blogspot.com

Avery's Bucket List: March 2013

http://averycan.blogspot.com/2013_03_01_archive.html

Imagine youve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, Im almost 5 months old, and this has become my reality. But before I die, theres a few things Id like to accomplish.this is my bucket list and my story. SHARE IT and HELP ME TELL THE WORLD ABOUT SMA! Saturday, March 23, 2013. Press Release from Families of SMA:.

hopeforcharleston.blogspot.com

Loving Charleston

http://hopeforcharleston.blogspot.com/2015/07/big-brother-party-i-know-i-know-i.html

This is my grandson, Charleston Sage Goeppert, aka "Cash." He has Spinal Muscular Atrophy Type 1. Doctors told us he wouldn't make it. This is my journey of loving Charleston. Friday, July 24, 2015. I know, I know, I haven't written in way too long.so what do I mean by "Big Brother Party"? MY CHARLESTON IS GOING TO BE A BIG BROTHER! I COULDN'T BELIEVE IT! I NEVER EVER EVER EVER EVER THOUGHT HE WOULD BE A BIG BROTHER! CAN YOU BELIEVE IT? And guess what he wanted? Soearlier this month, I gave my Charleston...

hopeforcharleston.blogspot.com

Loving Charleston: 2013-03-17

http://hopeforcharleston.blogspot.com/2013_03_17_archive.html

This is my grandson, Charleston Sage Goeppert, aka "Cash." He has Spinal Muscular Atrophy Type 1. Doctors told us he wouldn't make it. This is my journey of loving Charleston. Wednesday, March 20, 2013. AS IF she doesn't do enough already :). Charleston's mama is amazing. Truly. And I'm not saying that because she's my daughter. Really, I'm not :). Ashley got a makeover yesterday! Her wonderful, amazing cousin Jenny brought her "shop" over to Ashley's and got to work. See how long her hair was?

hopeforcharleston.blogspot.com

Loving Charleston: 2015-07-19

http://hopeforcharleston.blogspot.com/2015_07_19_archive.html

This is my grandson, Charleston Sage Goeppert, aka "Cash." He has Spinal Muscular Atrophy Type 1. Doctors told us he wouldn't make it. This is my journey of loving Charleston. Friday, July 24, 2015. I know, I know, I haven't written in way too long.so what do I mean by "Big Brother Party"? MY CHARLESTON IS GOING TO BE A BIG BROTHER! I COULDN'T BELIEVE IT! I NEVER EVER EVER EVER EVER THOUGHT HE WOULD BE A BIG BROTHER! CAN YOU BELIEVE IT? And guess what he wanted? Soearlier this month, I gave my Charleston...

hopeforcharleston.blogspot.com

Loving Charleston: 2013-03-24

http://hopeforcharleston.blogspot.com/2013_03_24_archive.html

This is my grandson, Charleston Sage Goeppert, aka "Cash." He has Spinal Muscular Atrophy Type 1. Doctors told us he wouldn't make it. This is my journey of loving Charleston. Monday, March 25, 2013. This little boy may not be able to move physically, but he is moving mountains in our world. He deserves an education. He is smart. He is capable. He loves to learn. He WANTS to learn. He NEEDS to learn. Welltomorrow they will meet with TWO Taylor women, and with Charleston's BIG DADDY! Links to this post.

hopeforcharleston.blogspot.com

Loving Charleston: 2012-12-02

http://hopeforcharleston.blogspot.com/2012_12_02_archive.html

This is my grandson, Charleston Sage Goeppert, aka "Cash." He has Spinal Muscular Atrophy Type 1. Doctors told us he wouldn't make it. This is my journey of loving Charleston. Sunday, December 2, 2012. I Believe in Miracles. Yesterday we celebrated a miracle. My Charleston turned three. THREE! Enjoy while you celebrate with us! Links to this post. Subscribe to: Posts (Atom). View my complete profile. Links to SMA information and families. I Believe in Miracles.

sophiascurefoundation.org

Get Every SMA Kid an iPad | Sophia's Cure Foundation

http://www.sophiascurefoundation.org/get-involved-blog/get-every-sma-kid-an-ipad

You are here: Home. Get Every SMA Kid an iPad. Get Every SMA Kid an iPad. February 2, 2011. We are launching an incredible, amazing, spectacular campaign! Get every SMA KID an Ipad! We have all seen how amazing Ipad’s are for our SMA Kids. Here is how it works anyone who sells anything on ebay. Can choose what portion of the proceeds go to our EBAY Store Sophia’s Cure Foundation. Let’s all do a Virtual Garage sale and get rid of some clutter in our lives! Filed Under: Get Involved. Hola, primero queria f...

sophiascurefoundation.org

Newly Diagnosed | Sophia's Cure Foundation

http://www.sophiascurefoundation.org/newly-diagnosed

You are here: Home. If you are a newly diagnosed parent to a child with SMA we understand that this time can be a scary and confusing for your family. Please know you are not alone. SMA Space is a wonderful resource for SMA Families from all over the country to connect and help eachother. www.smaspace.com. A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy: http:/ www.mda.org/publications/family guide sma standard of care.pdf. Please feel free to contact us.

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sophiascrochet.blogspot.com

Sophia's crochet

Creating things one stitch at a time! And I am PLANNING to crochet some gifts.the operative word is PLANNING. lol. For those of you who do this, what have been your experiences? Do you ever feel disappointed with the recipients reactions? Do you decide who would actually APPRECIATE the handmade good or not? DO you just make them because you want to and don't really care what the reaction is? Links to this post. Cute newborn crochet outfit. Posted using BlogPress from my iPhone. Links to this post.

sophiascuffclutch.com

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Our Vision is Coming Soon! The Cuff Clutch conceals important documents securely on oneself, such as a debit card or driver’s license. This functional design holds up to 2 cards, that are easily accessible. To the naked eye, this looks like a fashionable piece of jewelry. This is a worry free solution to carrying your valuable cards without a wallet or handbag that can easily be stolen or lost. Dallas, TX 75287 901-409-2782 sophiascc14@gmail.com.

sophiascuolaimpresa.it

SSI – Sophia Scuola D'Impresa

Area Amministrazione, controllo di gestione e finanza. Area Marketing e Vendita. Area Gestione del Personale. Area Sviluppo Manageriale nelle PMI. Gestione d’Impresa e Management Innovativo. Siate il cambiamento che volete vedere negli altri. Siate il cambiamento che volete vedere negli altri. SSI Sophia Scuola D'Impresa - Benvenuti nel nostro sito. SSI Sophia Scuola d’Impresa. È un servizio di formazione aziendale integrato con azioni di assessment. La Leadership ed il comando. Le segnalazioni d’i...

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sophiascure.org

Sophia's Cure Foundation

It has been a long time since I posted.I personally have been sitting back absorbing current events… read more. A Day For Avery……. Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati,… read more. UFC vs SMA Fight Night 1/31/15. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in… read more. A Night For a Cure. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. We are proud ...

sophiascurefoundation.org

Sophia's Cure Foundation

It has been a long time since I posted.I personally have been sitting back absorbing current events… read more. A Day For Avery……. Three short months ago, the Skeeters were blessed with the opportunity to meet baby Avery Lynn Canahuati,… read more. UFC vs SMA Fight Night 1/31/15. UFC vs. SMA Fight Night is gearing up to be a great event! Please join us at UFC Gym Long Island in… read more. A Night For a Cure. First child with Spinal Muscular Atrophy has been injected with AAV9 Gene Therapy. We are proud ...

sophiasdancejourney.com

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sophiasdays.blogspot.com

Sophia's days

Sep 9, 2009. I HAVE A FLAT! Or should I say room. Yippee! The only thing I did was email those at Beds Uni that you know, I can always sleep in a tent on their garden if I don't get a room now and then I suddenly was offered a room. Or something like that anyway. AAAAAAAAAAAAAAAAAAAAAAAAAAAHHH I can't believe I'm leaving! I can't I can't I can't. 12 days to go! Am I freaking out? Cecci wanted me to add some hot studs (from the uni) as friends on facebook but I didn't; I'm a coward. Aug 31, 2009. Hello he...

sophiasdaysofdancing.blogspot.com

Sophie's Days of Dancing

I am a Mormon. I am a Vegetarian. I am a Homeschooler. Saturday, December 14, 2013. Saturday, December 14, 2013. Thursday, December 12, 2013. Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending." -Carl Bard. 8220;Everyone has inside them a piece of good news. The good news is you don’t know how great you can be! How much you can love! What you can accomplish! And what your potential is.” – Anne Frank. Thursday, December 12, 2013. Check it out HERE.