Grace turned 7 this month. She has been wanting a Star Wars birthday party all year and her wish was granted, complete with a kidnapping by Darth Vader. Click below for some great pics and the kidnapping video.
Darth Vader Kidnaps Grace
Filed under: Photos, Video on October 5th, 2009 | No Comments »
Grace has her first soccer game today. She played last year and really liked it.
Some video: http://www.youtube.com/watch?v=Id-cLN20sD0
Filed under: Photos on September 12th, 2009 | No Comments »
I ran across this article today and thought it really showed how far CF treatment has come in recent years. It’s a lengthy interview with longtime CF researcher, Bonnie Ramsey. It’s an amazing article about how drugs to treat the underlying cause of CF are in phase II and III clinical trials and what that means for people with CF. If you know anyone with CF, this is as exciting as it gets. Dr. Black at the CF clinic in Kansas City is very excited about this and also feels this is a watershed moment for CF treatment.
When you read the article, keep in mind that Grace has two different CF genes. She has the most common gene, Delta F508. But, more importantly, she also has the very rare gene G551D, only found in 4% of patients. The article explains it better than I could:
“Then there’s the type 3, the G551D, which is what the Vertex product [VX-770] is working on. That’s where the protein gets to the surface, but it’s not properly activated. So it gets up there to the surface of the cell, but it can’t properly transport the salt.”
“But this [Vertex's VX-770] is actually trying to correct the protein. So if it works, we have shown this concept works. You actually can change a dysfunctional protein into a functional channel. Whether it turns out that Vertex is 100 percent successful or not, this is such a giant step forward, it’s like a man walking on the moon.”
Very powerful stuff. Since VX-770 is in Phase III and the trials have progressed well, this opens up the possibility that Grace will be able to take a pill that could essentially change the dysfunctional protein into a functional one. Simply put, if that works, she could take a pill and not have any CF symptoms.
Filed under: Cystic Fibrosis, News on August 7th, 2009 | No Comments »
Grace had a three month checkup at the CF clinic yesterday and continues to pass with flying colors. She is up to 47 inches tall and around 44 pounds. This puts her close to the 5oth percentile in both weight and height. She has been doing great this summer. She also blew a personal best in the PFT machine, which measures lung function, despite having a bit of a cough. She has been very active this summer, swimming a lot and is really enjoying herself. She’s going to be a first grader and turn 7 in September.
Filed under: Cystic Fibrosis, News on July 31st, 2009 | No Comments »
Yet again our team came through and raised over $5,000 for Great Strides. The walk was great, tons of people showed up, and although a bit muddy, the weather was great. Thanks to all who participated and donated. Click here for a couple more pics.
Walking along Brush Creek
Filed under: Events, Great Strides on May 7th, 2009 | No Comments »
http://www.nevadadailymail.com/story/1530549.html
Filed under: Events, News on April 15th, 2009 | 1 Comment »
The 5th Annual “Fishing For a Cure” Buddy Bass Tournament, held April 11th in Rich Hill, Missouri, raised over $1,100 in the fight against cystic fibrosis, a deadly genetic disease. With a total of 27 teams from all over the area, this year’s competition was the biggest ever. The charity tournament is an annual event to benefit Team Gracie and all proceeds are donated directly to the Cystic Fibrosis Foundation.
Teams of two checked in three fish each and prizes were awarded for total weight and biggest bass overall. Taking first place, Rusty Campbell and Tim Shreeve won the overall trophy with a total weight of 18 lbs for three large mouth bass. They won $100, which they donated back to Team Gracie, trophies, t-shirts and Craftsman Truck Series tickets to Kansas Speedway. Shawn Gould checked in the largest bass the tournament has ever seen, weighing in at 8 lbs, 12 oz. Shawn took home a tackle box, t-shirt and the “biggest bass cash pot”. Shawn, with his teammate Guy Nelson, also came in second place for overall team with a total catch of 15 lbs, 14 oz. They won tackle boxes, t-shirts and IRL tickets to Kansas Speedway. Dallas Jennings and Michael Simmons took home t-shirts when they came in third with a total of 10 lbs, 14 oz. With generous sponsor donations, everyone who competed received door prizes. At check-in, everyone enjoyed a smoked pulled pork and pork tenderloin meal, courtesy of Terry & Dixie Hoeper.
Sponsors included: International Used Truck Center of Kansas City, Insurtec Salon Insurance and Cabela’s.
Click here for more Buddy Bass Tourney Pictures
Overal Team Winners: Rusty Campbell, Grace & Tim Shreeve
Biggest Bass: Guy Nelson, Grace & Shawn Gould
Grace's grandpa cooking pulled pork and tenderloin
Filed under: Events, Photos on April 13th, 2009 | No Comments »
I thought I would direct everyone to Grace’s YouTube video of her singing Hannah Montana with her dolls. It’s been a popular video and many have commented. I think the consensus is that she is cute.
http://www.youtube.com/watch?v=gJHqg47JQCE
Filed under: Video on April 8th, 2009 | No Comments »
Grace visited grandma and grandpa’s this past weekend and her and Ace played together. They had lots of fun at the gravel pile.
Filed under: Photos on March 19th, 2009 | No Comments »
Thought I would update everyone on Grace’s regular CF appointment she had on Monday. She has an appointment every three months. Her appointment went great and the CF doctors were again impressed with how good she looked. She is holding steady on her growth curve and her chest X-Ray came back clear. Grace has had a little trouble with sinus infections lately and even had an eardrum burst a couple of weeks ago. Her CF seems to present itself that way more than any other. Winter is always the worst time for her and she also started kindergarten this year, so I’m sure that hasn’t helped.
The most promising thing about the appointment was what Dr. Black said about the future of CF treatment. Without getting into the specifics, he said that Grace has the two CF genes that are best to have. He is very excited about the therapy in the pipe and said he sees big changes in the next decade. That means that by Grace’s 16th birthday, he is very optimistic the treatments will be advanced to the point of minimizing the disease’s effect on her body. Good news indeed. The important things that Grace has going for her is her current good health and strong support from family and friends around her. She’s a special little girl and everyone does their best to keep her healthy.
I had to also add this picture of her making crafts. She asked me if I had “a big piece of paper”. I didn’t and when I came in her room later, she had taped together 6 sheets. She then drew a picture of a girl on it and cut her out. She’s very crafty.
Filed under: Cystic Fibrosis, News on February 4th, 2009 | No Comments »