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Bill Barnes
  • Male
  • Riverside, CA
  • United States
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Profile Information

About me:
I am a father of a 15 year old son who has Duchennes.
About my family:
I am divorced with two boys ages 18 and 15.
Name(s) of child(ren)/individual(s) with Duchenne:
Reid Barnes
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Riverside California

Comment Wall (16 comments)

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At 3:11pm on July 10, 2012, Ron Kohudic said…

Hi Bill,

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 I 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.

 

Sincerely,

 

Ron

At 9:39pm on June 6, 2009, MommaToo said…
Bill, it sounds as though you have lived out our worst nightmare. My heart and prayers go out to you. I cant imagine what pain you must be feeling. You sound like an amazing father who gave your son a great life. That is its own reward. Best to you, Catie, Brandon's stepmomma.
At 1:30am on June 4, 2009, Neil Brandom said…
Bill,
Love, condolences and best wishes from our family.
Neil, Cath, Dusty, Luke, gabriella
At 8:51pm on June 2, 2009, Beth Kilgore said…
Bill,
You and your family are in our thoughts and prayers. May all the fun times you had and all the good things you did to make Reid's life the best be a comfort to you. The Kilgore Family
At 4:36pm on June 2, 2009, Julie said…
I too was deeply saddened when I read your message. Although we may not know each other, we are deeply touched and affected by what happens to our boys. May god bless you and comfort you in this time of loss.

Julie
At 1:44am on June 2, 2009, Kari said…
Bill,

My heart goes out to you right now. I was deeply saddened to hear the news of Reid's passing. My heart breaks anytime I hear news like this. I am sorry about your loss and can't imagine. God bless you.

Kari
At 11:23pm on June 1, 2009, carrie said…
Hi Bill,
My thoughts are with you. Hard to imagine what you must be going through. Wishing you peace.
Carrie
At 9:36pm on June 1, 2009, Laurie Barton said…
Hi Bill,
I'm so saddened to hear about Reid. I think this is something that is always in the back of our minds, but is always a shock. I hope you find comfort with your family remembering the joy & memories you have had together.
Take care,
Laurie
At 8:12pm on June 1, 2009, cheryl cliff said…
You are more than welcome. Anytime you want to talk about stuff we are here at ppmd or you can reach us at cherylcliff@gmail.com. If for some reason you don't find a place for Reid's equipment (per your earlier message) I can get it to LLU for another DMD boy if you wish. I can't imagine what you are going thru right now. Paul and I are very sad to hear your news.
please take care
cheryl
At 7:29pm on June 1, 2009, cheryl cliff said…
Hi Bill,

My heart is breaking for you with the loss of Reid. I'm very sorry to hear of his passing. If there is anything Paul and I can do please feel free to ask, we are not far, live in Riverside too.
cheryl
 
 
 

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