Because Research Matters………..

So what's next you guys?............. As soon as we wrapped up funding on the Gene Therapy Program that was the first question asked by so many of our supporters. The day after we received many phone calls, emails and instant messages asking us where we go from here. We cannot wait to share our vision for The Sophia's Cure Foundation and how we can further the Spinal Muscular Atrophy research community..but first............. We are so excited that SCF has wrapped up such a long and … [Read more...]

Rebuilding…………..

Life seems to always present parallels. The world will never forget 911.......A day when countless innocent souls were attacked by a hatred that seems unfathomable. The World Trade Center took many years to build.........men and women joined together to create what would one day become  the symbol of American prosperity. It was no easy task........but thousands of hard working union men and women each played a role and worked towards a common goal.......Every day these hard working tradesmen … [Read more...]

Great Beginnings…….Sophia’s Journey through Spinal Muscular Atrophy

Somewhere through this journey.........we have been able to let go of the fear, let go of the pain and to enjoy this journey together......as a family. It is hard to pinpoint when the transitioned happened......it just did. Individually and collectively as a family things have gotten so much better than they were even a year ago. I know as a father I have been able to put so much anger, hurt and questioning to rest,..........and to begin to Love life in it's entirety again. I have been fortunate … [Read more...]

Gene Therapy’s Major Anonymous DONOR touched by AVERY”S BUCKET LIST

Today is a day of both overpowering grief and overpowering hope in the SMA Community. As we described in our previous blog post, beautiful Avery Lynn Canahuati, of "Avery’s Bucket List" passed away yesterday at just 5 months old. In their latest blog, the Canahuati family asked that donations be made in Avery’s honor to Sophia’s Cure Foundation to help fund Dr. Kaspar’s gene therapy program, which will be headed to human clinical trial by late 2012 or early 2013. As many of you in the community … [Read more...]

SMA IT FORWARD

Super SMA KID Cashel will be turning 16 soon, he took it upon him self to start SMA IT FORWARD......He is hoping his Facebook page will reach 1 million likes by the time he turns 16....So lets get out there and get our friends and family to make this happen. and Sharing is caring :) CLick here and like  SMA IT FORWARD.... We are pulling for you Cashel. … [Read more...]

The Spinal Muscular Atrophy (SMA) Communities “Bucket List”

The time has come to thank the many families and groups that have come together as part of the 200 commitments for SMA. Your efforts have pushed a program forward at a pace that has rarely been seen in our disease community. The community should be extremely proud of what they have been able to accomplish. Last year at a research conference I remember a representative of a panel state that a smaller organization could never fund any of these programs to the clinic. With your support.........we … [Read more...]

Its Fun to Beeeee Threeeee…………

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……..

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…….

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……..

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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