So much has happened in the last month and I keep thinking about blogging but just haven't been able to find the time. Well, this weekend I have something big to blog about. Our family has been incredibly blessed to be selected as one of four families who will share their story with the country on the National MDA Jerry Lewis telethon in Las Vegas this Labor Day weekend. We feel a great responsibility in sharing Kayla's story as it represents so many brave families across the world living with myotonic dystrophy. Our family has watched the telethon since I was a young girl and never in our lives imagined that we would be one of those families fighting for our lives. The MDA has been such an amazing help over the years and they connected us with so many wonderful resources and allowed Kayla to have the best medical care for kids living with neuromuscular diseases. I hope that you can all watch and support the MDA who does so much for families living with myotonic dystrophy and the 43+ neuromuscular diseases the MDA supports. Here are some of the highlights from the past month and a schedule of our appearances.
In June, the TV production team from the MDA decended upon our family for two fun filled days of filming. Our local Sacramento KCRA Channel 3 TV station came to film the shoot:
Tomorrow morning, Friday, September 4rd through the 6th, our family will be on the MDA homepage: http://www.mda.org/, talking about what the telethon will mean to us. The schedule has changed a couple of times already so hopefully we are still scheduled for those dates.
And then this weekend we will share Kayla's story and be interviewed live on the telethon. The current schedule for our appearances is:
Sunday, September 6 – Hour 2 – 6:55 - 7:45 p.m. Pacific
Monday, September 7 – Hour 19 – 12:30 - 1:20 p.m. Pacific
Find your local TV station that will be airing the telethon in your area.
Watch the highlights from the 2008 telethon. It's worth 10 minutes of your time so please take a few minutes to watch it.
Please come out and support the MDA this weekend and help to end these devastating neuromuscular diseases for good. Every dollar counts so please do what you can to help.
With Love and Hope,