Cure Dale's Duchenne

Helping to keep Hearts Beating

ginders — Sun, 26 Dec 2010 00:24:40 +0000

The Getler’s (another DMD family) made a challenge through PPMD to match up to 50,000.00 for a heart research study to see if drugs like Viagra in smaller doses can be benficial to the hearts of DMD boys. We matched the 50,000.00 and through PPMD the last number we heard was another 38,000.00 had been raised besides the $100,000.00. We hope this will be a great year for our boys with positive results from the heart studies and other clinical trials currently going on.

We all had a wonderful Christmas. The boys are having a ball with a few new Lego’s, Wii and DS games. Amazing how fast they can put together Lego’s.

At Dinner Dale and Lelia broke a wish bone and Dale wished for ending Duchenne for him. We hope we can all put an end to DMD in 2011.

Special Moment with Dale

ginders — Mon, 29 Nov 2010 01:32:25 +0000

We went to a local craft festival Saturday that was really crowded. Dale was trying out a smaller scooter to see how it would work in the crowd. He was a bit overwhelmed with the number of people there and was constantly wanting to keep going so we could get out of there. We rounded a corner and he saw a woman at a booth selling wood carvings and wanted to go see them. He rolled right into the middle of her area and got off the scooter to look around. He was asking her questions about some of the products. There were giant wood watchbands with a clock on them that Dale said a giant could wear. Then a really strange thing happened. He slid up to me and wispered for me to give him one of the HelpSaveDale business cards I carry in my hip sack. He took the card and handed it to the lady and said I have Duchenne, I can’t run very fast. I explained a little bit more about Duchenne. Dale just walked to my right and sat down on his scooter and just sat there looking at her and the wood works. It was the only time he’s ever done something like that and it was very strange that he wanted to sit right there with her and the woodworks. I was so impressed and surprised at how this had all transpired. You have to know Dale to know how unusual this is for him. It was great to see.

1st Annual Cure Dale’s Duchenne Garage Sale

ginders — Wed, 22 Sep 2010 02:15:47 +0000

October 2nd, 2010
3946 SW 89th Dr
Stratford Ridge
8AM-12PM

We are accepting donations of goods to sell at event. Please call Alisha Bowen to coordinate drop off/pick-up
352-246-3164
We are also having a Bake Sale and will be selling coffee and drinks. Come and browse or just donate.
All Proceeds will go to Cure Dale’s Duchenne Fund

Trip to Disney

ginders — Wed, 08 Sep 2010 12:15:56 +0000

We spent Labor Day weekend at Disney. Very short notice decision to go but we found out there were still slots in the Trek Triathalon and Lelia wanted to go for it even though she hadn’t trained. We tried out taking the Razor scooters this year for getting to and from the race. Dale can stand in front of me on the larger model and it made it pretty fun getting around for the race. On Monday we went to Universal to see the Harry Potter exhibit. It was pretty awesome. The boys got to pick out some magic wands and we did some of the rides. The ride through the castle was a bit rough with a lot of fast turns so I’m not sure we’d do that again with Dale. He says he enjoyed it but during one part where I could see him, right after the dragon blew fog at him, he didn’t seem very happy. Started downpouring about 5 so we called it a day and got drenched getting to the car. Surprisingly we let Dale choose whether we rented a cart or a wheelchair and he chose the wheelchair. Interesting how people look when someone’s in a chair.

We are Supporting Darius Goes West

ginders — Thu, 02 Sep 2010 17:32:13 +0000

We will be donating $15000.00 to help Darius Goes West with their “Know About It” schools program which will help get the word out about Duchenne to the next group of people that will make a change happen. Thanks to DGW for their continued efforts to spread the word about DMD.

We are Supporting the JettRiders

ginders — Thu, 02 Sep 2010 17:29:00 +0000

Email from the JettRiders:

Hi Rick and Lelia, here is our journey in a slideshow – can’t thank you enough for your incredible support AND LOOKING FORWARD TO 2011 – GAINSVILLE FLA IS ON THE MAP!!!!!!!!!

The JettRiders is a group of young people that travel across the country by bike raising awareness about Duchenne. We donated $10,000.00 as a matching contribution to their great cause. GO JETTRIDERS-See you in 2011.

JettRide 2010 [HQ]

July 12th 2010

ginders — Mon, 12 Jul 2010 12:38:04 +0000

The fourth of July was great. Dale and Lee LOVE fireworks and we usually have about 40 people over to watch the show. Weather was super, it rained early in the evening so there were no worries about burning embers.

Dale and Lee went to UF on Friday to get their MRI’s done. Dale is in the MRI study that hopefully will lead to a more scientific way to see if some of the clinical trials are stopping the muscle loss or changing the muscle for the better. The current exercises they have the boys do seems very subjective since the results can be influenced by how tired or energetic the boys are that day. Lee is a control for the 10 year old group. Definitely seemed easier for Dale knowing Lee was also in the study. It was fun hearing Dale telling Lee how great he was doing on the tests.

Cure Dale’s Duchenne Funding Update

ginders — Tue, 22 Jun 2010 21:34:36 +0000

Cure Dale’s Duchenne and our family helped by funding about $265,000.00 of this research. We would like to extend our heartfelt thanks to all of our donors who made this possible. Research is the only way we will save Dale and this generation of boys. This is such exciting news. The more research we can invest in the brighter these boys’ futures will be.

We also funded $114,000.00 through CureDuchenne to do a lot of the preliminary laboratory work on Exon 53. The goal of this research is to speed up the process of exon skipping when the time comes to begin trials on Exon 53.

Sincerely,

Lelia, Rick, Lee and Dale Ginder

Non-Profit Pledges $600,000 to fund Seattle Doctor’s Research aimed at finding a Cure for Duchenne Muscular Dystrophy

SEATTLE, Wash. – June 22, 2010 – CureDuchenne, the Orange County non-profit focused on finding a cure for Duchenne muscular dystrophy (DMD) is one step closer to that goal through the work of Dr. Jeff Chamberlain.

Dr. Chamberlain, of the University of Washington, in partnership with Dr. Stephen Tapscott, of the Fred Hutchinson Cancer Research Center, has identified a promising gene therapy that could lead to a treatment for DMD. The method delivers a new gene to the body’s muscles to replace the defective, disease-causing gene.

As the leading genetic killer of young boys, DMD affects more than 1 in 3,500 boys worldwide and is the most common and lethal form of Muscular Dystrophy. Boys with DMD are usually diagnosed by the age of five, in a wheelchair by age 12, and may be completely paralyzed by their late teens. Historically, most patients with DMD do not live to see adulthood. Duchenne can occur in any family, from any race and from any background.

Debra and Paul Miller, co-founders of CureDuchenne will allocate the $250,000 raised during last weekend’s 2010 Climb to CureDuchenne: Pick Your Peak, where teams across the country summitted mountains from coast to coast to raise awareness for DMD, along with the $165,000 raised by Mack and Sally Brown of Austin, TX during CureDuchenne’s annual “Dealing for Duchenne” fundraiser, to fund Drs. Chamberlain and Tapscott’s pre-clinical research.

“The focus of the trial will be on how the patient’s immune system will respond to the gene delivery,” said Dr. Chamberlain. Immune related issues have emerged as a major limitation on applying gene therapy, and the Seattle team has identified methods that appear to overcome the immune issues that have hampered many previous attempts at gene therapy. Another arm of this research will study the delivery of another gene, Utrophin, through AAV delivery. “I believe we’re on the precipice of an amazing breakthrough with this research. We’re seeing more and more that in order to get this kind of research to the human clinical trial stage, the funding has to come from non-profit organizations like CureDuchenne. Without their support of our work, we’d never have gotten this far,” Chamberlain continued.

If successful, the studies will lead to clinical trials aimed at improving strength in patients with DMD. CureDuchenne is playing a key role in funding not only the pre-clinical research but in providing funds to obtain regulatory approval from the FDA, which regulates all gene therapy and drug trials.

“This is what we’re all about,” said CureDuchenne co-founder Debra Miller. “CureDuchenne is dedicated to focusing on research that is en route to the human clinical trial phase. It’s this level of research that has true potential to save this generation of boys.”

6-15-2010

ginders — Tue, 15 Jun 2010 18:08:29 +0000

Just a short post to see how the blog works. Dale is doing well even though we can see a deterioratation in his muscle strength. He now asks to be carried more and getting up from being bent over is pretty difficult. We try to help him whenever we see him struggling.