Bill Barnes's Comments

Comment Wall (16 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

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
At 7:12pm on June 1, 2009, Mary Sahagun said…
Bill,

Just read your post and am in shock! I am saddeded and so very sorry to hear of your son's passing. I pray you find peace and comfort during this difficult time. My prayers go out for you and your family.

God Bless, Mary
At 6:40pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 7:12pm on February 2, 2009, cheryl cliff said…
Hi Bill,

My husband and I recently received your message about needing care for your son. Oddly today at the first page of the PPMD website there is a coordinated organization that says they have services to fill the need you are asking about. You might want to check into that one.

By the way...we live in Riverside too with our 2 sons - Alexander age 10, DMD and Max age 9, not DMD.

cheryl
At 12:04pm on January 18, 2009, Julie Garcia said…
Hi Bill,

If you want to send me an e-mail on anything please feel free to e-mail me at:

marcnjulz@aol.com

Hope all is well.

Take care,

Julie
At 9:40am on December 12, 2008, Julie Garcia said…
Hello Bill,

My son will be 17 years old. We live in the Sacramento area. Please consider joining the California families. Perhaps you will have information you can help us to build more resources.

All the best!

Julie
At 10:10pm on December 11, 2008, Marian Lamberson said…
Welcome to PPMD Bill! You will find plenty of support here. There is a Dad's only group...Take care...Your boy is a cutie!

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service