Tuesday, May 12, 2009

Angelman Syndrome Awareness!

Dear Family and Friends,
In just a few days, we will be attending out second Angelman Syndrome Foundation walk-a-thon. We are so excited to see all the other angels and their families and for a beautiful day! There is so much going on in the research area of Angelman Syndrome and there are some exciting things in the pipeline. There have been many developments that bring us hope for theraputic treatments and hopefully someday a cure! Josh recently finished his supplement study at UC San Diego, we hope to participate in more studies as they become available. He is still enrolled in the Natural History study, which basically tracks and studies the growth and development of those with Angelman Syndrome. While there is much on the horizon, none of this can be accomplished without your help! Every year, we come together to raise awareness and money about Angelman Syndrome and for The Angelman Syndrome Foundation. They are currently the primary funders of research grants and studies. They also provide many services to families of those with Angelman Syndrome.I know with the economy in the state it is, that times are tight for everyone, but anything you could donate to Josh's fundraising team would be greatly appreciate.

We are also excited to share with you some of Joshua's many accomplishments in the last year. Josh has been working very hard at many things over the last year! We have been so fortunate to have so many professionals in his corner assisting him and rooting for him all the way. I think one of his biggest accomplishments this year has been learning to walk unassisted! While he still can't walk by himself 100%, he has really made huge progress in this area, especially in the last couple of weeks. Last week at therapy, he walked 11 steps unassisted! His physical therapist Sheri Tom has been working with him since just before he turned 3 years old! She has worked so hard with him and it's paying off!

This is also Josh's second year in preschool. He LOVES school so much! Last year, he was the baby in the class and all the other kiddos really took the time to make him feel good and to always help him. This year, he's the big boy in class! His teachers and aides have been working with him on many directive skills, art skills, and self help skills. He is doing so remarkable! I love watching him in the morning hold someones hand and carry his lunch to the refrigerator and put it in! It is so cute! I think his favorite is circle time, his teachers say he likes to be in the thick of things. Doesn't want to miss out on any fun! He is sitting unassisted in a toddler chair at school now too! He's just growing up so fast! He is eligible to transition to Kindergarten next year. I'm still on the fence about that, since school starts in September and he doesn't turn 5 until December, but we'll see. His new teacher if he does transition is great and I think he'll have a great time. I know he will miss the kids remaining in preschool and I know he will miss his preschool teachers and aides!

Josh and Jocelyn are very close. Jocelyn takes really good care to help her big brother when he needs it. They are both very empathetic to one another as well. When one is upset, they both are upset. They love to entertain eachother as well. While Josh never tires of his little sister, there are times when our drama queen is done with him though....he just laughs though!

I know this email is late getting to you, we've had our hands full this year with our new little peanut on the way and time just slipped away from us. This is still an endeavor of great importance to us. We would be overjoyed to see in our lifetime theraputic treatments to make our sweet Joshua's life and the life of other angels better and easier. Ultimately, we would love to see a cure for this disorder! Please help in anyway you can! If you would like to attend the walk with us, we would love to have you! Josh would be overjoyed at the support!

Donations can be made at: or by making a check to the Angelman Syndrome Foundation and getting it to either Greg or myself by Friday. The online donation is a safe and secure site set up by the Angelman Syndrome Foundation. This is the easiest way and you can print a copy for your tax records!

If you are interested in walking with us in Sacramento, please email me and I will get the details out to you!

Laurie, Greg, Josh and Jocelyn
You can also click on the link on the side of my blog as well!

Support Josh in raising awareness and money for Angelman Syndrome! Walk-a-thon May 16th 2009Join the Fun!


Krista Lund said...

i just need to get off the couch to get my CC info.

i admire you for all your hard work and love! it will pay off!!

erin said...

thanks for the update, mama. great job you're doing raising your beautiful family!