Saturday, January 23, 2010


You may have heard, but the Gwendolyn Strong Foundation did it. Yep, they stuck it out in 6th place to win 100,000 dollars to help cure SMA. I am in awe of what I watched Gwendolyn's family--and indeed the SMA community at large--accomplish in one week. 52,000 people came together to help cure this. 52,000 people--celebrites, singers, a major TV producer, parents, friends and family united to give hope to children who have little.

It was amazing to watch. A true miracle. 52,000 people who believe in hope.

I know I have talked about this on multiple occasions, but I am feeling it very strongly tonight. I got to thinking about how much that hope means to me. I used to see hope as hope for something I wanted for Christmas, or hope that it wouldn't rain. It's so much more now.

It's a lifeline.

Without that hope, I'm not sure how well I'd be handling Dakin's condition. I mean, I am not living in a place where I have rose-colored glasses on about the reality of Dakin's condition. I get it. I know it. I know what could happen. I know that no one is even looking into treatment for his condition, at least in the US. But I also know that if something could be developed for SMA, there is a serious possibility it could help SMARD as well. And as thin and distant of a hope that that is, it is hope all the same.

So tonight, I have hope. And I am grateful to those who helped provide it for me...the Strongs, and all 52,000-ish people who chose to believe too.

Thank you. It means more than I could ever say.


Foster mama K said...

Your post brought tears to my eyes. Hope is a powering thing. I pray that they find a cure SOON. So glad GSF won!! I was a facebooking mad woman!

Colleen said...


annalee said...

i voted and was so excited to see the winner!

Valerie said...

I have a question. You mentioned that no one is researching this in America. I don't know anything about it, but on the Gwendolyn Strong Foundation page it says:
Although SMA is not commonly known, SMA research is extremely mature and active. Dramatic breakthroughs have been made in the past fifteen years and, as a result of those breakthroughs, SMA has quickly gone from a poorly understood disease to being on the doorstep of a viable treatment. Towards that end, the National Institutes of Health (NIH) has coined SMA as the disease “closest to treatment” of more than 600 neurological disorders...

And on the Facebook info for the Chase contest, it said that this year UC Irvine will be starting a human clinical trial. It sounds like someone here must be working on it. And I know that everything goes VERY slowly even after some miracle is found, but it sounds like there is great reason to hope. I do hope that they will find treatment very soon and a cure right after (if not at the same time!).

Devon said...

Valerie: that's a really good question. Dakin doesn't have SMA--he has SMARD, which is in the same family of disease, but is far, far rarer than SMA. SMARD acts in very much the same way as SMA as far as nervous degeneration goes (which is why it is lumped in with SMA), but is caused by mutations on a different gene.

Our hope in supporting 'regular' SMA research is that a treatment/cure could be developed that may help Dakin's particular condition. For example: stem cell research. Stem cell treatments go in and repair dead or damaged nerves, so it would be a viable treatment for SMARD as well as SMA. If a drug specific to the mutations of SMA is developed, it would not help Dakin.

The only problem is that once a treatment/cure is developed for SMA--if it is even viable for SMARD--it would take a long time thereafter, if ever, to get it approved for SMARD. There are not enough SMARD kiddos around to do any kind of study to see if such a treatment would even work, so you see our somewhat hopeless situation with Dakin.

So all we can do is hope. Like I said, no one over here is researching SMARD, so all we do is hope for SMA research. There are just not enough SMARD patients for the docs to even bother with it, beyond data gathering purposes.

I hope that answers your question!!

Dorie Howell said...

Devon, this is so great, I hope that my little part helped a bit. I was excited today to find a random photographers website and they had a link to Chase Community Giving on Facebook. I was almost scared to click it but I did and there was The Gwendolyn Strong Foundation. We got help from so many places. I hope that our little part will help Dakin and all his friends with SMA or SMARD.

Valerie said...

I do remember reading that on your blog now about his special mutation. Sorry I forgot. It is hard how long everything takes to develop and get approved. It's too bad treatment for SMARD seems so very far down the road. But we'll keep praying! Thanks for educating me. :)

Amanda said...

Hurray, I'm so happy that it made it! What an amazing thing and it will give so much hope to so many people!

TMI Tara said...

I am SO glad and will continue to hope right along with you. xo