Exciting News
September 24, 2003 by · Leave a Comment
Hello everyone.
Just wanted to update you on some new and exciting news for Savanna and SMA research. Savanna is doing fabulous right now. Had some respiratory issues a few weeks ago, but we were able to treat it at home and didn’t even have to be on antibiotics. She celebrated her big 2 year old birthday last week and has been acting every bit of her age. We are thrilled to have her act like a normal 2 year old. She is really starting to talk more. Only has a handful of words she can say, but she is vocalizing a lot more and that is wonderful news. It is so sweet to hear that little voice. She says mama all day long and ah-ah for daddy. She got to see her grandparents this weekend (Tim’s parents) and had a really good time at the zoo (her 1st time).
We got great news yesterday. Scottish Rite Hospital in Dallas is one 15 centers across the US doing active SMA Research. I’m sure a lot of you were able to see Dr. Iannocone on the news a few weeks ago when they were broadcasting for the Labor Day Telethon. She said we are very close to a cure and she feels it will come about in her lifetime. They want to do a motor skills test with Savanna and videotape it to be used as a training video for the other 14 centers. By her participating in this study, she would have the opportunity to also participate in a drug trial they will begin sometime next year. We are not “confirmed” yet on that, but I’m sure we’ll know more in a few months. This is such BIG news. This particular drug trial will be done without placebos so we will know that what we are giving Savanna is the actual drug.
Savanna’s little friend, Darrell Alan (also a 2 year-old) will begin taking Valproic Acid any day now, as he is participating in another drug trial. Please pray for him and for the outcome of this new treatment. They have told his parents they expect to see an increase in muscle strength as early as a few months. It is so exciting to see that they are SO close to a drug therapy for SMA; to the point that they may in the future have a drug that will diminish all the symptoms of SMA leaving children to live an active, regular life. The great thing about Valproic Acid is that it is already approved as a drug to treat children, so that in itself will cut down on many steps involved if it proves to treat SMA. Some of you may already know that it is commonly used to treat seizures.
I feel the Lord has some big things in store for us in 2004. Please continue to pray over these doctors and researchers as they try to find a cure for our little angel and all of her friends. We need to continue to pray not only for Savanna, but for all of these children as we are approaching respiratory season. As you remember, last respiratory season nearly took Savanna’s life because of RSV. Thankfully Tim and I are much more aware of her symptoms and how to aggressively treat her when she gets something as little as a runny nose. We have learned so much the last year. Please continue to pray for wisdom, guidance, peace and strength for us as her parents.
We are enjoying every day with Savanna. She is still such a sweet child and has such a funny disposition. She loves to make us laugh. She loves to read books and sing songs, much like any other 2 year old. We are still waiting on approval from the insurance company to get her a power chair. All the follow up with medical bills and insurance proves to be a full-time job in itself. I can’t wait for the day that these issues will be resolved. We have signed a contract to begin building a new home, one that will be handicap accessible for Savanna. That should be complete in February and we have our house on the market. We also will be moving our space for Curves, just a few doors down. We will be moving into a bigger space and one that is a little more visible from the street. Savanna has gotten so big now, 34 inches tall! I will let you all know an update on the drug trial as I know more. I will also keep you updated on Darrell Alan’s progress with the Valproic Acid. As always, thank you for your prayers and support.
Close to a Cure
September 17, 2003 by · Leave a Comment
I just wanted to share this with you all. They are SO close to a cure/treatment for SMA. It is so exciting to be able to see as the time approaches and to remind us all why we work so hard for the fundraiser. I love that the clinical trials are thru doctors that are FSMA funded. We know that 25,000 dollars was blessed and will continue to bless others. Darrell Alan, Savanna’s little boyfriend, will be participating the in the Valproic Acid clinical trial so I will be able to keep you all up to date on his progress. They expect to see AT LEAST 10% increase in muscle strength.
Thanks for all you do!
Love,
Mindy
Dear Members and Supporters of Families of Spinal Muscular Atrophy,
Today we are announcing an important step forward in our efforts to find a treatment for SMA. Two clinical trials are set to begin using 2 different drugs that have been shown to increase SMN protein levels. Project Cure SMA team member, Dr. Kathryn Swoboda, and her team at the University of Utah and Primary Children’s Medical Center will conduct these studies in tandem. Both studies are drug safety studies that will examine the tolerability by SMA patients of medications currently available for treatment of other diseases and conditions. More information about these clinical trials can be found at
http://www.fsma.org/curesma.shtmlI would like to thank the entire Project Cure Team for their dedication in developing the reliability measures for testing outcomes. I would also like to thank all of our families and our incredible chapters – it is through their commitment that Families of SMA is able to fund these two clinical trials.
Thank you,
Audrey Lewis
Executive Director, Families of SMA
audrey@fsma.org
Savanna’s 2nd Birthday!
September 3, 2003 by · Leave a Comment
It’s the birthday that several doctors thought Savanna might never see. Please join us as we celebrate her BIG day. This birthday will be a huge milestone considering that 50% of all SMA children diagnosed before the age of 1 never live to see their 2nd birthday. We plan on having a big birthday bash every year to celebrate our little angel’s life!
Savanna will be sharing her big day with her cousin Samuel who will be celebrating his 1st birthday. We will have a bounce house, popcorn machine, hot dogs and drinks, so come and have a good time.
WHEN: Saturday, September 13th from 11-2.
WHERE: Saginaw Community Center located at 700 Park Center Blvd.
Quick Update
September 1, 2003 by · Leave a Comment
Here’s the story that was on Channel 5 Tues night about SMA research that we missed. We will be at Lone Star Park tomorrow for the Channel 5 telethon answering phones from 1:30 – 3:30 and present the check from last year’s MDA SMA fundraiser. Hopefully you will see Savanna on TV.