Comment

Comment by Lisa Marandino on October 18, 2010 at 8:59am

Hi Everyone,
I wanted to let all of you know, we are having a benefit concert to raise funds for DMD research. Our nephew is a very talented musician who is releasing a new CD. Instead of just having a release party to make money for himself, he decided to donate all profits to Duchenne research for his cousin. It is on November 6th in Willimantic CT. His web site is themikep.com. Let me know if you would like more information. I can email you the flyer we are using. We are still trying to find sponsors/donations if anyone knows anyone willing to help. Thank you!!

Comment by ewh on August 10, 2010 at 2:08pm

Go directly to mass general fir children home and go on pediatric neuromusclar service
I also just sent a friend request and will send my info if u want.
My son is almost 3
have tried another clinic And think mgh Is best in area!

Comment by Scott Harris on August 10, 2010 at 1:13pm

We did see an artlicle about the Jett Foundation and Dr.Tseng from Mass General ( http://www.patriotledger.com/lifestyle/health_and_beauty/x858459529... ), however, our current team of doctors knew very little about Mass General's programs and I could not reach anyone from the Jett Foundation on their website.

Comment by Kathy on August 10, 2010 at 8:45am

Welcome Scott and Kim. My husband Dave and I are in Haverhill, MA with our two children, Ella (5.5 yrs) and Keelan (will be 3 next month). We found out Keelan has DMD when he was 15 months old. You found out early too I see. We were also grateful to know early. Have you heard about the Jett Foundation out of Mass General? Great program!

Comment by Scott Harris on August 9, 2010 at 8:59pm

Hello everyone!

My Wife, Kim, and I just wanted to take a moment to introduce ourselves.

We have 3 Children. 2 daughters and a son. Our oldest is 6 years old, our middle child will be 4 and is autistic, and our youngest just turned 2.

About 4 months ago, our youngest child, Jason, was diagnosed with DMD. Although the diagnosis is hard to accept, we feel blessed that we have the opportunity to get him care on all levels much sooner.

We live in Monson, Ma which is just outside of Springfield. We are always looking to meet and help families who are dealing with children with special needs.

We also travel to Rochester, N.Y. to visit family once or twice a year. So If anyone is in the area and would like to get together, please dont be shy!

Comment by Tonya on November 25, 2009 at 3:10pm

Thanks so much for the input everyone - we are definitely asking for a referral to MGH!!!!!

Comment by Michelle on November 25, 2009 at 2:11pm

We see Dr. Brian too, and we're very happy with the quality of care. We used to go to Childrens, and I think they're very knowledgeable, but we love Dr. Brian's demeanor and he's so great with the boys. The team there is incredible too. I would agree with the other posts on how proactive the MGH team is.

Comment by Kathy on November 25, 2009 at 9:02am

We also go to MGH. We sill go to Childrens too b/c we really like Dr. Kang. But MGH is going to put Keelan on Ace Inhibitors and is much more proactive.

Comment by Anne Hancock on November 25, 2009 at 7:36am

Hi Tonya,
I second Lisa's post. We were going to Children's at first but have since switched to MGH. We felt that the MGH clinic was more intuned with our son's needs and more proactive in keeping him ambulatory.

The clinic is on Tuesdays and when you go for your appointment you meet with everyone; the nurse, Dr. Tseng, the Physical Therapist, the Orthotist (if your son needs night braces), a social worker, and a mobility specialist. It may sound overwhelming (and it does make for a tiring day) BUT the care is VERY wholistic.

Because my 7 year old son started steroid therapy this past April, the clinic also sends us to a Cardiologist, a Pulminologist, an Endorcrinologist, and a Nutritionist all located at MGH. Since you just got your diagnosis take what you want from my information; I don't mean to overwhelm you. But know that the MGH clinic staff are an amazing group of professional, dedicated and supportive people whom I have come to appreciate and trust.

Anne

Comment by Lisa Marandino on November 24, 2009 at 8:15pm

Hi Tonya,
We go to Mass General with Dr. Brian Tseng. We love him. We live in CT & have been out to Ohio to see Dr. Brenda Wong. She was wonderful, but the trip was very difficult. Then we found Dr. Brian at Mass General. We feel blessed to have such a dedicated doctor & staff not to far away.

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