Hey Donna, was thinking about you guys not to long ago. That is wonderful news that Jordan is doing well. I didn't realize he was a junior already. Will he be able to drive? We just got back from Dr Wongs last week, they said Jonluke was stable, but he hasn't grown in height at all in a year. They recomend him taking the growth hormone, and right now Dr Wong is doing study on them. She asked us to be in the study and every thing would be paid for. DId Jordan take them? Also we started the heart meds, they said he had a little fibrosis and we should start. He did well in the timed test they said he timed like a normal kid. THe PT said he was tight in the ham strings and finger flexors. We haven't been to good at the stretching but are starting back on it. How about Jordan does he do the stretching regularly? How about the night splints? Jonluke hates to wear them. I'm so happy that Jordan is doing so well, gives me more hope for Jonluke. Jonluke is doing well physically, he just started 6th grade at a new school. He has a rolling back pack this year which makes it so much easier, they would not let him have one in Elementary. Hope I didn't ask to many questions, Keep in touch
I think we just don't know if making more muscle is going to be enough in the long run...maybe, but my bet is that it will really work best to use something like ACE-031 to make more muscle and then a utrophin upregulator to stabiilze that new muscles. In combination these approaches might result in a really effective therapy. Unfortunately they will both have to be tested separately first, but if these drugs start coming on the market people will start using them in combination (as long as they are safe together). I don't know how recruitment is going in the Acceleron studies so far...I know they have two sites open now and are hoping to have a total of 6-8 eventually. We are talking to them about ways that we can help with recruitment and we may have an announcement to that end soon.
So, ACE-031 really is different from MYO-029 in that it blocks the entire pathway that myostatin was just one part of...it turns out that there is probably a whole group of molecules out there like myostatin that can put the brakes on muscle growth, If you block myostatin you get some effect, but you still have those other molecules out there doing their thing. But all of these molecules use the same cell receptor so if you block the receptor instead you take them all out with one fell swoop. That's what ACE-031 does. If you compare it directly in the mice to just blocking myostatin you get signficantly more muscle mass by blocking the receptor.
One encouraging thing is that in the trial of ACE-031 in healthy volunteers the volunteers saw a significant increase in lean muscle mass. It's not clear that this was the case with Wyeth's MYO-029 drug. I
Hi Donna! My husband has talked to Stuart. I guess they connected thru some GE affiliations...if I have the story right, your husband worked with Bill Hudson who is a good friend of ours. I am glad your son is doing so well- it gives us all hope!! Jonathon has a larger deletion of 8-31. He seems to be doing well, he has a great attitude and thinks that he has the ability to do everything like everyone else! We got into Cincy in early Aug. so he has been on the Deflazacort which we can see a difference in the energy level!! That is good. I think the hardest thing is trying to let him be a kid and deciding when enough is enough!! Curious to know what Jordan's deletion is- but then does it really matter? Would love to talk with you sometime. I will send you my email address.
Donna, good to hear from you, I love hearing that Jordan is doing so well, gives me hope. How did you find out that Jordan had DMD? We came across it by accident, my home page tells how. Jonluke is also very bright and loves to build things and scored very high on an IQ test that our public school gave him. He had problems with distractions and staying focused, that is what led us to this diagnosis. Does Jordan have an IEP? We just got ours in place for this school year. He will have modifications when needed. Were in small town called Magnolia and there is at least 10,000 kids in the district and Jonluke is the only kid they have had with DMD. I had to do a lot of educatiing on the diease. Thank goodness every one in his school has been very supportive and will do what ever we need done. Also is Jordan taking steroids, I can't remember if I read if he did or not. Jonluke has had a huge energy jump since being on them. If Jordan is on them, did you have any issues with gaining weight? Jonluke is the pickiest eater, it has to have the right texture and consistency or he won't eat it, I'm not to concerned that he will gain excessive weight, but will keep a close eye on it. Let's keep in touch
Donna, Hi, I haven't posted to you yet, haven't been on here much in along time, our sons have the same deletions and we also live in Texas and go to Dr Wong, so looks like we have alot in common. I'm a couple years behind you, my son is 9. It's great to see your son is doing so well, I hope mine is doing as well as yours in 5 years. Jonluke is doing great since he started the steroids, it's hard to beleive he as MD, he is always going, he keeps up good with his peers much better now. He does get tired on long distances but so does some of his peers with out MD. We should stay in touch and keep each other informed since we share the same deletions.
Hi! i really appreciated your post several months back and your pictures are inspiring! It sounds like you've made steriods work for your son. We just initiated steriods for Jake (5) after a year of holding off. He's not having a lot of trouble, but the muscle weakness is evident when he gets tired. I wanted to see if you have any recipes or input when it comes to daily diet. Do you really watch sodium? Push water? I'd really appreciate any little tibbit you may have. All my best, Wendy Bertellotti
No I didn't go. Most of my work time off is taken up by our trips to OH. We are going in 2 weeks to see Dr.Wong. We have another clinic up here, started by Dr.Tseng and the Jett Foundation at Mass General. We went there for our 6 month follow-up. They are modeling it on Cincinnati, but there are not as organized yet. But I like Dr.Tseng almost as much as Dr.Wong. So this may be our last trip out. However I have mixed feeling about that. The boys are doing great. I am doing ok too. Much better all the time. I have a really good job now and I only work 30 hours so that makes things less stressful. Calvin just got a scooter but he doesn't really need it much yet but we were not sure how long it would take so we wanted to be proactive since he will need it when he gets to high school. Other than that I just keep gardening to keep my self sane :)
Hi Donna! This is Kristi Koop and I met you in Austin at the MDA Stride and Ride right after Jordan had been diagnosed. I just wanted to check in and see how you and your family are doing. You can email me at firstname.lastname@example.org
I just saw your e-mail from a month ago. Thank you for your advice--will look up the person in Dallas and try to make a connection. We're still having the emotional ups and downs--luckily the "ups" are lasting a lot longer.
Hello Donna. I apologize for the delay in responding. Needless to say, I have been totally overwhelmed (both work and home life). Eric and I just got back Friday from visiting Doctor Wong. You are indeed just around the corner. I also just discovered another DMD mother whose office is on the same floor as mine and less than 100 feet from my own.
Jordan is clearly older than Eric, who turns 6 in one week, so I would definitely be interested in speaking with you.
Hi Donna! I am trying to catch up with a few folks. How are you guys doing? Ben is doing the first step in drivers education to get his permit next month if the State approves his medical forms. He is hoping to be on the road this summer (stress level will be up). I am planning on going to Atlanta in June. We go to Cincinnati a few weeks after that for our annual Dr. Wong visit.
Donna: I am working at the computer and saw your note...We are also making it a family vacation just not sure when we are leaving or extending the vacation before of after the conference. I have cousins North of Atlanta, one of them being in Blairsville that we plan on spending some time with. Tyler and I are headed for Cincinnati Childrens Hospital tomorrow for a Thursday all day appointment. Don't know if you and your son also go there? It would be fun to connect up in the future at a Dr.Wong visit...I am thrilled that my son is in the shape he is in...and how hard he works to stay that way...so for now I can only say that I am thrilled to meet another family with a child that appears to be at the same stage of DMD. I am not great with returning emails or even looking at the computer because life always seems so busy so if you would feel comfortable giving me a call or I could call you would appreciate that. My husband and I are going to a large PPMD fundraiser this weekend here in Chicago so it would be great to talk to you after that...My number at home is (708)226-6901..Hope all is well...Kathi Cooley
Hi Donna: My name is Kathi. We live in the Chicago Suburban area. I noticed your name on the 3-7 deletion area. Just wanted to say hi...we also have a 13 yrs old with the same deletion....we also have twin 10 year old girls....that ice skate....Would love to hear from you guys. Are you planning on attending the conference this year in Atlanta..We are planning on going and bringing the kids....Would enjoy meeting up with all of you...Kathi