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I want to thank all who contributed in any way to Bradley's Race to End Duchenne. Through this event, we were able to raise awareness for Duchenne Muscular Dystrophy and funds for Parent Project Muscular Dystrophy. We raised over $11,000 Gross (and over $9600 Net). Here are some pictures from the event.
For Immediate Release: April 24, 2013 Contact: Lisa Jones, (618) 697-4194, jonesfamily91@msn.com
LOCAL FAMILY FIGHTS FOR A CAUSE CLOSE TO THEIR HEART AND HOME
Cobden Family Hosts a 5K Walk/Run and Silent Auction to Raise Awareness and Funds for Duchenne muscular dystrophy
Cobden, Illinois – Sixteen year old Bradley Jones is a fighter. And the name of his toughest opponent is Duchenne Muscular Dystrophy (Duchenne). When Bradley was three years old, he was diagnosed with Duchenne, a progressive muscle disorder that causes loss of muscle function and independence. However, with the spirit of any good fighter, he lives life to the fullest, surrounded by the love and support of is family and community.
On June 1, 2013, Bradley’s family and friends will host a 5K and silent auction at the Cobden Community Park to raise awareness of Duchenne, a little known and often misunderstood genetic disorder, and to raise funds on behalf of Parent Project Muscular Dystrophy (PPMD). PPMD is a national nonprofit organization started in 1994 by parents of young men diagnosed with Duchenne. The Jones family is actively involved with PPMD and hopes to inspire the Southern Illinois community to come out, have fun, and make a generous contribution in support of Bradley and PPMD.
“We want everyone to know more about Duchenne muscular dystrophy and how it affects people in our own neighborhoods and communities,” said Lisa Jones. “Our 5K and silent auction is a fun way to raise awareness, however, the purpose of the event is very serious because much more research is needed to fight this disorder.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy’s mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite, and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne.
Go to www.ParentProjectMD.org to learn how you can support our efforts and help families affected by Duchenne.
Interviews Available
The Jones family, Parent Project Muscular Dystrophy executive staff, and experts on Duchenne muscular dystrophy are available for interviews.
Event listing details:
Who: The Jones family (and any other community partners)
What: Bradley’s Race to End Duchenne
Where: Cobden Community Park on Locust street in Cobden, Illinois
When: June 1, 2013 9:00am to 2:00pm
Why: To raise awareness and money for Duchenne on behalf of PPMD
Additional Info: For more information about the event, please visit www.parentprojectmd.org/bradley
Top Sponsors for the event include Farmers State Bank of Alto Pass and Wade Dover Construction, LLC. ###
Bradley’s visits to Cincinnati Children’s Hospital went well this time. The doctors are so amazed by his muscle strength and ability to walk at the age of 16. He is getting tighter in his hands and hamstrings, so he will have to start the hand splints again.
They are concerned about his ongoing right foot pain. They gave us some suggestions to take to the local orthotist. They also suggested we get a scooter from the MDA loan closet, if they have one, just to save him a walk from the high school building to the grade school building where the cafeteria is located.
Bradley's cardiac function is holding steady. The left ventricular ejection fraction on the echocardiogram was 48%. We are increasing the lisinopril and aldactone dosages to get the optimal therapeutic dose.
It has been awhile since I updated the blog.
We went to Cincinnati Children's last month. Bradley's muscle strength tests were very good. The doctors continue to be amazed that Bradley is still walking. Because he only uses a manual wheel chair for long distances on occassion, he could very well continue to walk for another 2 years. This is such a miracle! I thank God for what he is doing.
We did get some bad news this time concerning Bradley's heart. His ejection fraction of the left ventricle decreased from 56% to 47% in a little over a year. This is a significant drop in heart function. It has been anywhere from 56-57% with lisinopril and carvedilol. Now he is on a third heart medicine called aldactone. This is a aldosterone blocker that works as a diuretic.
He was going to be in a study for a similar drug called eplerenone. The doctor doing the study actually called us with the MRI results letting us know his heart function was too low for him to be in the study. He would in fact need treatment with a similar drug (aldactone). It was hard getting the results, but it was caught early.
They sent Bradley home with a 24 hour Holter monitor to check his heart rate and rhythem. This test was normal.
They also advised us to find a cardiologist close to home, in addition to his cardiologist in Cincinnati, so Bradley would have someone to take care of any heart problems that may arise in between our visits to Cincinnati. We also need to have a plan in place in case emergencies arise. We found Dr. Soto in Cape Girardeau, MO. He will see Bradley on December 27th.
Bradley's ankle problem has continued, but the MRI confirmed he does NOT have Avascular Necrosis. He does have a lot of degenerative changes and evidence of injuries in both ankles. They gave us two treatment options, a cortisone injection or fusion of the ankle bones.
We plan to take him back to the orthopaedic in Springfield, IL to see if that doctor will give him an injection. It will probably have to be done in the OR and guided by X-ray. This is the recommendation of the Orthopaedic in Cincinnati. The orthopaedic in Springfield that saw him before is no longer there, but Dr. Gabriel has taken over all of her patients. Hopefully, they will go along with recommendations from Cincinnati.
Stephanie is starting her second year of college. She has decided to go into Elementary Education and will continue taking General Studies and get her Associate Degree at Shawnee College. She is taking 5 classes this semester.
Stephanie has someone new in her life. His name is Kyle Hines. He is from Texas originally and is currently stationed in the Air Force in the state of Washington. He will be there for the next 4 years. He has been in the Air Force for 6 years.
They have been talking to each other since November, 2011, but came to realize their relationship was more than just friendship in April, 2012. We met Kyle on Skype a few times. He also attended our Tuesday Night Home Bible Study twice on Skype. He actually participated and you tell he was knowledgeable about the Bible and being a Christian.
He spent a week of vacation here earlier this month, so that he could spend time with her and meet her family. He started the week off by surprising Stephanie a day early on her birthday. She was speechless when I took her to Dairy Queen and he appeared from around the corner. One of the girls at Dairy Queen recorded a video as we all walked in.
While Kyle was here, I was impressed by so many things. He had great manners and was a gentleman. Every morning he would come help Stephanie with her chores before they would spend the day together. He was always willing to help any of us out and offered his help many times.
He and Stephanie even helped us in the Cobden Peach Festival parade, when we needed two people to carry the Marching Appleknocker Banner. I had posted a request on facebook looking for banner carriers. He saw it and texted me, asking if we still needed banner carriers. He and Stephanie came to the rescue and carried the banner through the parade.
He was always willing and happy to spend time with Stephanie's family and get to know all of us. He had supper with Stephanie's immediate family several times and even took us out to eat one night. He met some of Tom's family at our weekly Home Bible Studies. He also spent time at my parents' home one night.
While he was here, he attended our Tuesday night Home Bible study twice, he attended my parents' church, and he attended our church at Noel. He didn't just attend, he participated in discussions.
Stephanie and Kyle really love each other and believe God has brought them together. Although things are not official yet, they plan to get married more than a year from now.
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