Nana
  • Female
  • Satellite Beach, FL
  • United States
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Nana's Friends

  • Michelle Boling
  • Russell Luhring
  • Michae Jensen
  • Moein
  • Dariya Liubenova Dobreva
  • Jenise Furman
  • Cori
  • Donna Gluck
  • Fran Clavey
  • Garrett Rodes,

Nana's Discussions

evacuation/safety plans for school?

Started this discussion. Last reply by Nana Dec 20, 2012. 3 Replies

Can you use Deflazacort every other day?

Started this discussion. Last reply by Maria Isabelle Salamon Mar 23, 2013. 16 Replies

 

Nana's Page

Profile Information

About me:
Very interested in connecting with other families.
Name(s) of child(ren)/individual(s) with Duchenne:
Charles
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Satellite Beach
State:
FL

Comment Wall (14 comments)

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At 1:47pm on July 18, 2013, Russell Luhring said…

Hi Nana,

I've sent you a friend request so that way we can send messages to each other with our contact information safely. I would love to meet you and your son. Kyle may be fifteen as the story is told, but it is important that I understand the entire progression of Duchenne. Thank you for responding and taking the time to help me. Warm regards,

Russell

At 1:15pm on January 29, 2013, Nicole France said…

Thank you Nana for your comment. We are going to our local MDA this Thursday and one of the DMD mom's I met through FACES is giving me her son's old wheelchair. We are definitely feel blessed to have my son's immediate needs met. At least now I can focus on what is ahead of us and relax a bit more now. We'll be looking into a power assist scooter or chair since he could use it at school which would help him conserve his energy.

At 4:17pm on July 12, 2012, Ron Kohudic said…

Hi,

My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.

 

Please let us know if you would be willing to speak with one of my colleagues or me in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.

 

Please let me know if we can contact you at your convenience.

 

Thank you for your time and cooperation in this effort.

 

Ron Kohudic

rkohudic@sireninteractive.com

708-434-6234

At 7:56am on March 12, 2011, Garrett Rodes, said…
So sorry I haven't responded sooner but was very excited to hear that Charles enjoys his Aflac duck!  Garrett just turned 10 and last fall we got a new van for him to drive his power chair into so we don't have to lift him into a vehicle.  Hope all is well and we must catch-up sometime! - Ronnie
At 11:59am on December 28, 2010, Fran Clavey said…

Hi Nana,

 

Thank you Nana.  Hope you and your family has a Happy, Healthy and Safe New Year!

At 10:03am on June 16, 2010, Fran Clavey said…
Hi Nana,

Thanks for adding me as a friend. Charles is a cutie. Hope he's doing well. Would love to attend the meeting, please let me know more.
Thanks.
Fran
At 9:51am on June 16, 2010, Fran Clavey said…
Hi Nana,
Thanks for accepting my friend invitation. Charles is a cutie...hope he's doing well. No, I have not received an email for the next meeting...I am interested in attending so please pass this along to Sandy. Thanks and hope to talk to you very soon!
Fran
At 2:11pm on March 25, 2010, Donna Gluck said…
Nana,
I am compiling my demographics at this time. Wondering if Imay have your age and education level. Highest degree earned. I will share this with no one. Just working on my tables. How are you and Charles? He really is a very cute boy!
At 2:20am on January 14, 2010, Cori said…
NANA!!! Just wanted to check in on you and see how you and Charles are doing...I totally apologize for the delay, but little Treyman and the US Navy have me running from appt to appointment, it is crazy...I would like to brag that the insurance is FABULOUS, but I feel like they are making us do WAY more then we actually need him to do...2 different schools they have enrolled him in a Speech School (6 hrs week) and a Private Pre-K (12 hours wk) then 2 PT, 2 OT and an inhome one on one speech session once a week...it's INSANE...I pray that it will slow down and he doesn't get exhausted with everything...

But did you have a good Christmas and New Years? I hope you guys had just a fabulous time!!! If you need to talk remember that I am here!

Hugs! Cori
At 10:00pm on November 7, 2009, Cori said…
Nana,

Little Charles sounds alot like Little Trey =)...does he get 'stuck' on certain stuff? Like he will say something you will then respond and then he will just keep saying it? I just say that this behavior is just our Treyman, but I am starting to wonder LOL...

The Isomers, no problem, still don't understand, but I am not to bold as to keep asking for help regarding understanding it...I sometimes feel like an idiot when it comes to those things though!

I have noticed that Trey is very routine oriented and secondairly to that he learns best hands on, but don't most kids LOL...But for now he is doing very well in school...I can't imagine though being like you and homeschooling, I don't think I could get Trey to sit still long enough nor have the patience to do it, so although it has crossed my mind, I say KUDOS to you! I have never seen that huge of a deletion...how is he progressing if you don't mind me asking?

Give yourself a BIG hug from us! Cori
 
 
 

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