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

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

Members: 26
Latest Activity: Sep 5, 2013

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 Adele on October 27, 2009 at 9:09pm
Hi all, I'm Adele and my son Jason is now 24. We live in Columbia, Maryland. I was just looking around and found this group and had to join. I was glade to read that Diana Escolar is going to be at Kennedy Krieger. We have seen Dr. Wagner for many years and do have a great repor with her and the rest of the Adult DMD team.
Comment by Tina on September 3, 2009 at 1:21pm
Dear Families, Friends and Colleagues,


I've signed a contract with Kennedy Krieger Institute in Baltimore and will start seeing patients again on a part time basis at their new Center for Inherited Muscle Disorders. Depending on how long it takes to obtain my Maryland license, my first clinic will be once a month (on Fridays) starting probably late November or December.
Dr. Kathryn Wagner is the director of the Center, and has started seeing patients in July. At this new Muscle Clinic, patients will be evaluated by a Neurologist, PT, OT, social worker and coordinated appointments can be made for the same day as needed to see the Physiatrist, Orthopedist, Cardiologist, Pulmonologist, and nutritionist, all within the Institute or across the street at John Hopkins Med. Ctr.

Kennedy Krieger Institute (http://www.kennedykrieger.org/index.jsp) is affiliated to John Hopkins University, just across the street from the JH Medical Center. It is an internationally recognized facility for children with disabilities and genetic disorders. It recently opened a new building where the Muscle Clinic is located...it is amazing!! It has a therapy garden with all kind of different surfaces for evaluation of ambulation and other outdoor life activities, a kitchen and bathroom for OT and PT evaluations, a fantastic Aquatic Therapy pool with underwater treadmills and video capacity, so you can take a DVD with you to show your local PTs what you did and needs to be worked out. It also has a supervised waiting room, with a Wii, easy access and valet parking for patients, an education room and more.

Dr. Kathryn Wagner (full time) and myself (part time) will be seeing patients. We are also committed to bringing exciting clinical trials for our patients to participate, while we continue to strive in delivering aggressive diagnosis and treatment for neuromuscular disorders. As both, Dr. Wagner and myself are adult neurologists, and the Institute has broaden its patients population, we will also evaluate and follow up adult patients (no age limit to 18 or 21!), which makes a great transition place for our patients.

Although I am not in the "system" yet, you can call Jean Smoot at 443-923-9412, have them ask for an appointment in the Muscle Clinic and make a note that it is to see Dr. Escolar whenever I start my first clinic. Then, as soon as they know my starting clinic date, the will call patients in the order they have registered in this list and will start filling up the slots. I will be seeing 4 to 5 patients on a half day on Fridays, once a month. As many of you have already asked, I know the first couple of months will quickly fill up. But if we need to, I can add a second clinic day per month.
In the mean time, you can start gathering copies of your records, especially neuromuscular evaluations, genetic testing, muscle biopsies, to bring with you on the first day.

I have missed you and am happy we might be back in touch.

With warm regards,

Diana Escolar
Comment by Sarah on April 1, 2009 at 7:29am
Has anyone found "cool" good looking shoes to fit over the DAFOS?
Comment by Sarah on March 31, 2009 at 8:49pm
Hello! My name is Sarah and my son's name is Mason. He is 14. We also see Dr. Leschner at CNMC. Where does everyone go to MDA Camp? We go to Leonardtown, MD. Good to know there are so many people that have this one thing in common. I know sometimes I feel like we are alone and are the only ones!
Comment by cristina chandler on March 29, 2009 at 8:42pm
Hi
My name is Cristina Chandler, Shane is my husband, Samuel 5 and Cristus 3 are our two boys just diagnosed with Duchenne, we are going to see Dr. Leshner this week. We live in Fredericksburg VA.
Thanks for this page, is great to have some families close to us.
Cristina
Comment by Chris's Mom..Chris Wade McClusky on February 25, 2009 at 12:33am
Hi! My son and I are from Baltimore, MD. Christopher is 20 and he goes to the MDA Clinic at Johns Hopkins.
Comment by Michelle Diamond on October 14, 2008 at 7:11am
What a great idea, glad to have found the group! Our family is from Newport News, Virginia. Our son Miller is 13 and has Duchene, we have another son named Josh who does not have Duchenne. Along with 2 dogs a guinea pig and a house we are trying to remodel!
Comment by Jacobs Mommom on August 12, 2008 at 11:45am
I should have added that these people are absolutely wonderful and have taken us under their wing as family which is not something Fire Companies would do in our area.

They had a reporter there who interviewed us and I made sure it was not all about Jacob but more about PPMD and how to get in touch with them to donate.
Comment by Jacobs Mommom on August 12, 2008 at 11:43am
Okay everyone I am from PA and have a grandson, Jacob, 8 years old with Duchenne.

The reason I joined your group is this:

Jacob and I were fortunate to meet up with a woman who is part of the Ocean City, MD Fire Company 2 years ago while she was taking pictures of an event to put on their website. She asked Jacob if he would like to go up in the trucks ladder and he did and after that we struck up a conversation about Jacob and DMD.

The Fire Chief heard about Jacob and wanted to do something special for us this year. He wanted to pay for us to go down for a week all expenses paid as well as take a tour of the town on a firetruck and "hang out" with them. We have a camper so we told him that we were already registered to stay at Frontier Town but we would love to have Jacob take a tour on the firetruck. We were down there last month and we visited them at the Fire House. They asked Jacob what truck he wanted to ride on and of course he picked the biggest one. They took him, my daughter and Jacobs sister for a ride and Jacob got to blow the horn. When they came back they let him go up in the ladder and one of the fireman gave Jacob his coat. They let them crawl all over the trucks and just have a ball.

They wanted to treat us to dinner but we said 3 year old Meredith would be tough so they paid for us to have take out seafood at the Assateague (sp?) Crab House which was delicious. They also gave us free tickets for Jolly Rodgers and Jacob got to drive race cars.
They wanted to do soo much more for us but we told them that as much as we really appreciated all that they wanted to do we felt as though it was too much for us because of owning a camper and being able to pay for our vacation. They did however get us one extra day and paid for it which was something I couldn't do myself because we were told they were booked up.

Okay now to my point:) I know that there are families out there and maybe some of them are in your area who can't afford a vacation and who would love to be able to take them up on their offer so if any of you know of any families who can't afford a vacation please send me a private message so that I can contact the Fire Company and let them know of them.
Comment by Liisa Underwood on June 24, 2008 at 11:12am
Melissa, my son Connor is also 3. Looks like many of see Dr. Leschner. Love the team there!
 

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