About Catherine Gaynor

Mom to beautiful Sophia.... SMA Type 1

KASPAR LABS GENE THERAPY FOR SPINAL MUSCULAR ATROPHY IS……..

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FDA APPROVED.....we are happy to be able to share this news with you. 1,631 days ago our Sophia was diagnosed with SMA Type 1.......That same day in the living room of our small home in Wantagh, NY The Sophia's Cure Foundation was born. This has been a long, hard road; and yet one of the most rewarding journeys of our lives. We never gave up hope, we never stopped believing.  Thousands and thousands of you have stood by us, with your bake sales, collection cans, Marathon runs, Walks, Duck … [Read more...]

Santa visits Sophia……

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An amazing family friend contacted Santa and told him all about Sophia. Immediately upon hearing about what a special little girl she is he requested to visit Sophia at her home!!! Sophia loves Santa....loves the stories and the decorations and just the symbolism that Santa gives .....not just presents but gives his heart and time and love!!!! Santa to Sophia is not just about getting presents.....its about showing love, taking that extra time for a hug, or another story even though you read ten … [Read more...]

Daily News Article

Read the full article here. … [Read more...]

Wantagh -Seaford Patch supports Sophia’s cure

http://wantagh.patch.com/articles/steamfitters-uniting-to-find-cure-for-wantagh-girl-battling-spinal-muscular-atrophy … [Read more...]

A Night For a Cure

August is SMA AWARENESS MONTH.....Please join us for a cocktail fundraising party on Thursday August 16, from 7-11pm. Help us end SMA!!!! Click here for more details and registration info!!!!  EVENT … [Read more...]

Golf for a Cure in honor of Nathan Banjany!!

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SCF is so excited about the 2nd annual Golf Event in honor of Nathan Banjany, hosted by GMM Consulting, Cuhaci and Peterson, Kimley-Horn and Associates Inc and Terracon.  We cannot thank them enough for supporting SMA. Come on out and join us Friday Oct 19 at Huntington Hills Golf Club in Lakeland FL. Tons of sponsorship opportunities…. For more information or to register online click here. Hope to see you all there!!!! … [Read more...]

Its Fun to Beeeee Threeeee…………

sophias party

Sophia turned 3 on February 27 2012.....We  feel so blessed every milestone we reach with our little girl. When she turned 2, I think we felt like a big weight had been lifted (she had reached a milestone that the Dr.s said she never would make) so this last year has really been amazing. She has beaten the odds and loving her life on HER terms!!!! And we are so lucky to be along for this amazing ride!!!! This past weekend we had Sophia's Birthday party (in true Sophia Style.... ;) at Nunley's … [Read more...]

Up up and away………..SUPERMAN……..

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We received a beautiful card from Marisa Conte. Marisa is friends of Coby Quinn Kulis's family. Coby was a beautiful little boy who lost his battle to SMA on February 27, 2011. The same day our daughter Sophia turned two...... Lori and Dave are one of the bravest people we know, they spent every second of every day they had with Coby loving him, making him smile, and making beautiful memories that they will cherish forever. Ever since the day Coby flew to heaven they have spent every second of … [Read more...]

Asking for Prayers…….

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I first want to apologize if we seem MIA lately.......besides Sophia having a rough winter (thank god she seems to be over her sickies) We have been dealing with a lot of personal issues. Vinny is the last person to ever come out and ask for prayers or sympathy.....but I am......Vinny has been dealing with his own disease since I have known him, Crohns Disease......When I was pregnant with Sophia we got the disease into remission and under control, but as you can imagine once Sophia was … [Read more...]

Aiden……..

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I remember when Sophia was first diagnosed and Vinny and I started meeting other SMA families online ...we would look at all the photos of the beautiful children. I will never forget when we first came across Aiden's photos......his big beautiful smile was so infectious it just made you want to smile. It was hard to look away!!!!!! You could see the happiness radiate from him, you could just tell all the love and happiness his mommy and daddy brought him just poured out from him!!!! We were … [Read more...]

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