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


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

Members: 28
Latest Activity: Dec 19, 2019


Prices for Night Splints

Started by Arthur Carr Aug 31, 2012. 0 Replies

Fundraising Idea

Started by Jacobs Mommom Feb 20, 2009. 0 Replies

Comment Wall


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Comment by Cathy Johnson on September 5, 2013 at 12:43pm

I'm thinking of setting up an event in the Alexandria/Arlington are for Coach to Cure MD.  Anyone interested in participating?

Comment by Cathy Johnson on August 29, 2012 at 12:46pm

Coach to Cure MD is September 29th.  I'm toying with organizing a local event.  Is there anyone out there who'd be interested in joining in?

Comment by Cathy Johnson on March 25, 2012 at 9:17pm

James goes to the local Catholic School but does get services through ACPS - primarily speech therapy.  I've been happy with the therapists he's seen, and with their willingness to work with us, even though he's not in ACPS.  Fairfax county schools are rated nationally.  I don't have much experience with their services for kids with special needs, but I've heard they're pretty good.  It is a big district, however.

Comment by Nana on March 24, 2012 at 11:46pm

thanks everyone for the medical advice.  Does anyone have advice regarding school systems?  We are currently looking at apartments that fall either in the Alexandria city public school system or Fairfax county's public school system.  Is one better than the other regarding special education services?  Our son has met criteria for ADHD and LD in reading, math and writing.

Comment by Amy Ridolphi on March 19, 2012 at 11:40am

Nana - I also live in Virginia. When you get settled, I would encourage you to sign up for the DD waiver through Virginia's Department of Medical Assistance Services. The waiting list is long (several years) so it's important to go through the paperwork and evaluation early. But it does provide good support for in-home care assistance, respite, technology assistance, etc. My son doesn't need these services now, but it's nice to know they will be there when he does.

Comment by Holly Peay on March 19, 2012 at 11:03am

Hi Nana, through DuchenneConnect (PPMD's registry) we have started a clinic survey, allowing families and clinics to share info about the care provided.  Unfortunately we don't have many family responses to the survey from the DC/Baltimore area, but there is a summary of care offered at Kennedy Krieger (info provided by the clinic) at the link below.  And a plug--PLEASE fill out this survey and tell others about what you like and don't like about your clinic!  The survey is a bit long but includes a lot of useful information for other families.


Comment by Adele on March 16, 2012 at 11:32am

Hi, I'm Adele and I live in Columbia, md.  Even though it is a bit of a comute, for doctors, I would be at Johns Hopkins.  Jason is now almost 27.  He saw Dr. Crawford, the cardiologist, Dr Thompson and pulmonogist, Dr. Noah Letchzin(?).  We now see Dr. Kathryn Wagner at Kennedy Kreiger Adult DMD Clinic.  They are terrific.  Sine Hopkins is a teaching hospital and a research facility, I feel they are the most forward thinking place your son can be at.  Also, there is a wheelchaur sports program that is offered.  They are part of Kennedy Kreiger, but I do not know if there is a link on their website.  If you want contact info, let me know as I have it.  It is a great program and office lots of competive sports like baseball, floor hocky, football and swimming.

Comment by Cathy Johnson on March 16, 2012 at 8:07am

Nana - I live in Alexandria, and would be happy to give you information either through the forum or offline.  As with anything - deciding where to live all depends on what it is you are looking for.  In terms of medical care - We're military so when it comes to basic pediatrics I won't be much help.  In terms of Duchenne - We're seeing Dr. Thomas Crawford at Johns Hopkins, and we like him a lot.  I think most in the area see the team at Children's Hosp National Medical Ctr and I'm sure they have good things to say..

Comment by Nana on March 16, 2012 at 2:49am

Hi, My husband just accepted a job at the USPTO in Alexandria, VA.  Does anyone have any suggestions of where to live and where to get medical services? We are relocating from Chicago.  Our son is 9 yrs old.  thanks.

Comment by Holly Peay on September 22, 2011 at 10:47am

Hello families in VA/MD/DC, I am PPMD's director of education/outreach and a genetic counselor- in case it is ever helpful to have such a person close by, I live in Richmond (yes, it is a long commute to the PPMD office!) and am happy to be a local resource in any way I can.  Holly Peay



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