Families from the Maryland, D.C., Virginia area

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Families from the Maryland, D.C., Virginia area

Members: 27
Latest Activity: Feb 14, 2017

Discussions

Prices for Night Splints

Started by Arthur Carr Aug 31, 2012. 0 Replies

Fundraising Idea

Started by Jacobs Mommom Feb 20, 2009. 0 Replies

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Comment by Amy Ridolphi on September 9, 2011 at 3:15pm
Hi Sarah! We're meeting at Champps at Stony Point Fashion Park at 3:30-7 on Sept. 24. We're having a raffle and have some fun prizes donated from area organizations. If you have a chance to call me this evening, I'd like to know more about your son and we can include him in our fundraising communications. I'll add it to our event Facebook page and the email invitation we've been distributing. My cell is 804-405-2480. I'm up until 10 or so tonight or call me anytime over the weekend. It's nice to know that another family is close by.
Comment by Sarah on September 9, 2011 at 3:07pm
Hi Amy!  We live in Fredericksburg and would love to be involved with the Coach to Cure MD at Virginia Tech!! Can you give us information??
Comment by Amy Ridolphi on September 9, 2011 at 2:32pm
We're organizing an event around Virginia Tech's participation, but live in Richmond.
Comment by Adele on September 9, 2011 at 1:37pm
I would love to, but I believe it'a the weekend of Sept 24th, and we are already booked.
Comment by Cathy Johnson on September 9, 2011 at 1:21pm
Anyone out there interested in organizing something locally for the Coach to Cure MD efforts?  It's 2 weeks away.  I keep thinking I should do something, but haven't put anything together.  I'm in Alexandria
Comment by Cathy Johnson on December 9, 2009 at 11:00am
We have an appointment with Dr. Crawford in early January, so I'll chat with him about it then. I like Dr. Crawford a lot, especially his quality of life approach. I'm glad others like him too. I'm also glad Dr. Wagner, whom I've heard a lot about, is close by. Though it's hard to see sometimes, we are blessed to have the best doctors out there in our backyards.
Comment by Tina on December 9, 2009 at 10:33am
Cathy, Dr. Escolar who use to work with the DMD children at CNMC is also working with Dr. Katherine Wagner. I started a thread on here about it. I think it's under the advocacy thread. Good luck.
Comment by Adele on December 8, 2009 at 1:34pm
Cathy, There isn;t a direct connection between Kennedy Krieger and the MDA clinic at Johns Hopkins, but KK has a new Muscle Disease clinic, headed up by Dr, Katherine Wagner. As far as I know, she will see both children and Adults. Dr Crawford was Jason Neurologist when he was younger and now see Dr. Wagner at Hopkins. We love then both. If you want information from Dr Wagner, He email is wagnerK@KennedyKrieger.org
Comment by Cathy Johnson on December 8, 2009 at 10:23am
Does anyone know what (if any) affiliation there is or will be between Kennedy-Krieger and the MDA clinic in Peds Neurology there? (Is it that Kennedy-Krieger sees adult patients??) We live in Alexandria, VA but chose to go to Hopkins for our son's care. He is 4. Our neurologist is Dr. Thomas Crawford. We're also working with Dr. Mendell at Nationwide Children's Hospital in Columbus Ohio.
Comment by irishgirl on December 7, 2009 at 8:28pm
Hi Everyone!! We live in Aldie, near Middleburg and also see Dr. Leshner at CNMC. We had a very rocky start with Leshner, but things are some how working themselves out. I just felt like all the information I needed to learn about DMD and trials and such, I learned from this site and not Leshner. But he is proving to be much better than originally anticipated. My son is Liam and he just turned 10 last month. He is doing so well - at times I cannot believe it. He runs all around, jumps, rides horses, swims - but most of all, he is the happiest darned kid I've ever laid eyes on. WOrse than loosing him to DMD would be for Liam to loose his happy spark. That would be the worst thing ever. I;m so happy to know there are so many wonderful people with amazing bioys right around the corner, it would seem. Thank you all for creating this spot here. Is anyone eagerly awaiting trials like the AVI one in Ohio and Prosensa's anticipated trial? Liam is missing exons 48, 49 and 50 which put him in a wonderful place is this horrid disease. But my million dollar question... Does the gray cloud every go away?
Thanks, Noreen
 

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