First of all, I met the most amazing people!!!! There were about 7-8 SMA families there, including 3 kids. Each family had its own story......but really, our stories are the same. We "get" it. We know what it's like to hear those words "Your baby won't live to be 2." We know what it feels like to watch your baby stop breathing. We know what it is to love these kids. And some of them know what it's like to bury their baby. I never want to get there. Here is a picture of the SMA "family" that attended:
Which brings me to what I learned!!!! We have researched so much of what's out there for SMA --- and now believe that the biggest impact on our little Charleston will be from gene therapy. Not that any of the other things won't be a help also ---- but it looks to us like gene therapy will make the biggest difference.
There is a family, Vinny & Catherine Gaynor, who have a daughter with SMA, Sophia. They have started a foundation - Sophia's Cure, http://www.sophiascure.com and are raising money to help fund the gene therapy research done by Dr. Brian Kaspar in Ohio. Vinny & Dr. Kaspar were both at the fundraiser, and I had the pleasure of spending time with them and coming out of there with HOPE. Dr. Kaspar is an amazing man. He loves our babies. He is doing his utmost to save them. And we adore him for it. This is Dr. Kaspar & I at the fundraiser:
Our biggest hurdle is money. He is THISCLOSE to taking it to the FDA for the 1st clinical trial. He gets his funding from families like us. Fundraisers, donations, garage sales, bake sales, ebay sales, golf tournaments, donating a portion of sales, etc. And we are all helping in whatever way we can!
Ashley's best friend, Cindy Field, is organizing a bake sale just for this purpose. All proceeds will be going to Sophia's Cure, which will send them on to Dr. Kaspar's program. Here are the details:
"Hope for Charleston" SMA Research Fundraiser and Bake Sale
Time
Saturday, February 19 · 12:00pm - 5:00pm
Location Flying colors comics And Other Cool Stuff
2980 Treat Blvd
Concord, CA
More Info
WHAT: "Hope for Charleston" Bake sale (yummy treats, healthy options, and some comic book giveaways too!)
Spinal Muscular Atrophy (SMA) is a motor neuron disease. It is the #1 genetic defect killer of children under the age of 2. Often parents are carriers of the disease but show no symptoms. Over time the disease can interfere with muscle control in any part of the body including those connected with breathing and swallowing. H...owever, there is STILL HOPE. A cure is right around the corner!
***all proceeds go directly to SMA Research***
WHEN: Saturday, February 19th, 12-5pm
WHERE: Flying Colors Comics and Other Cool Stuff, 2980 Treat Blvd., Concord, CA (Trader Joe's shopping center)
DETAILS: Concord natives and Carondelet and De La Salle graduates, Ashley and Cameron Goeppert had a baby boy, Charleston "Cash" Sage Goeppert on December 1st, 2009. Ashley, a registered nurse and Cameron, a volunteer firefighter in Verdi, Nevada, thought that they were having a healthy baby boy. Tragically, they were told at Cash's three month check up that he was"floppy" and tests proved that he had the genetic disease SMA. This devastating news has not stopped them from doing EVERYTHING they can to keep their baby boy. Ashley quit her job as a nurse and takes care of Cash 24 hours a day, doing numerous types of therapy with him. He is a happy, smart, funny, handsome and loving 13-month old. We want to find a cure to help save his precious life and every child afflicted with this horrible disease.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. It is the #1 genetic defect killer of children under the age of 2. Often parents are carriers of the disease but show no symptoms. Over time the disease can interfere with muscle control in any part of the body including those connected with breathing and swallowing. H...owever, there is STILL HOPE. A cure is right around the corner!
***all proceeds go directly to SMA Research***
WHEN: Saturday, February 19th, 12-5pm
WHERE: Flying Colors Comics and Other Cool Stuff, 2980 Treat Blvd., Concord, CA (Trader Joe's shopping center)
DETAILS: Concord natives and Carondelet and De La Salle graduates, Ashley and Cameron Goeppert had a baby boy, Charleston "Cash" Sage Goeppert on December 1st, 2009. Ashley, a registered nurse and Cameron, a volunteer firefighter in Verdi, Nevada, thought that they were having a healthy baby boy. Tragically, they were told at Cash's three month check up that he was"floppy" and tests proved that he had the genetic disease SMA. This devastating news has not stopped them from doing EVERYTHING they can to keep their baby boy. Ashley quit her job as a nurse and takes care of Cash 24 hours a day, doing numerous types of therapy with him. He is a happy, smart, funny, handsome and loving 13-month old. We want to find a cure to help save his precious life and every child afflicted with this horrible disease.
We hope you can attend if you're local!!!! And if you're ever looking for a wonderful foundation to donate to........................remember Sophia's Cure . They're a family, just like us, trying to save all of our babies. Charleston says thank you!!!!
