The MDA and GwendolynDecember 20, 2010 by Victoria Strong SMA is a muscular dystrophy disease. Like cancer and its many awful versions, there are many forms of muscular dystrophy that fall under this one umbrella. The Muscular Dystrophy Association was the first organization to really put a face to these many diseases with long and often hard to pronounce names impacting so many people. ALS/Lou Gehrig's disease, duchenne, and a whole host of other diseases, like spinal muscular atrophy, fall under that muscular dystrophy category and are represented by the MDA.
Since Gwendolyn's diagnosis, we have gotten to know our local MDA chapter and the great work that they do. And as with any organization or effort to propel SMA closer to a cure, we are more than happy to help.Parvaneh Givi is Santa Barbara's Executive Director and she is simply awesome. You may remember that this year we participated in the MDA Telethon. It was Parvaneh who nominated us. And we are so, so, so excited that this year Parvaneh and the Santa Barbara office have decided to dedicate their annual major fundraiser, the Winter Wine Down, to SMA research -- ALL of it! Isn't that AWESOME!!! We can't wait to be involved and help. More news on that soon -- it's going to be F.U.N.!
Just a few weeks ago the Santa Barbara Fire Department participated in the annual MDA Fill The Boot and Gwendolyn was asked to be the event "Ambassador." She was very excited and that day at preschool she made a very specific gift for all the firefighters who selflessly used their day off to raise money for the MDA (she was very bossy about what colors go where and wanted them to have lots of glitter ). When we arrived we were so moved to see all the firefighters really rallying donations, smiling and cheering drivers on, and as soon as they saw Gwendolyn they enthusiastically rushed over to meet her. She was so proud to give them her special artwork and was busting at the seams when they gave her a firehat and a special firefighter sticker! Because of their hard work, over $7,000 was raised -- in one afternoon!!!
This weekend we were really excited to be invited by those same awesome firefighters and Parvaneh to participate in the annual Santa Pancake Breakfast. It was held at the central station in Santa Barbara -- with all the BIG trucks! When we arrived it was busy and lots of children were running in and out of all the trucks. We were immediately greeted by Parvaneh and Olga from the fire department. They showed Gwendolyn the neat craft table where she quickly spied the glitter glue and wanted to make beaded bracelets with Daddy! And before we knew it Santa arrived on one of the big engines waving and smiling. Gwendolyn was L.O.V.I.N.G it! In years past she has always cried with Santa. Not this year. She was immediately waving and wanting to see him. We waited away from the crowd and she was growing impatient so I whispered in her ear, "Santa told me he wanted to meet you privately because you have been such a good girl this year." Her eyes got HUGE and she immediately quieted down and patiently waited for her turn (I nearly melted!). When Santa came over we were all so excited and Gwendolyn was in awe. She was especially thrilled when he handed her a present! We spent the rest of the morning climbing on the fire truck and talking to all the incredible men and women who help keep us safe.
Here is a short video of Gwendolyn meeting Santa.
Oh and click here to watch the clip from this year's MDA Telethon. This was shown throughout Southern and Central California. Gwendolyn really liked the lights