"David,
I am sorry you are in such a place as it is so hard. I believe our sons have a chance at a good life. Is it the same as my other kids no but it is good. If possible to focus on what can be done rather than what cannot be…"
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Cheri Gunvalson
- Female
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Cheri Gunvalson's Groups
Cheri Gunvalson's Discussions
Bi Pap mask
Started this discussion. Last reply by Ann Avery Jan 12, 2010. 5 Replies 0 Favorites
automatic doors
Started Aug 26, 2009 0 Replies 0 Favorites
Intercoms
Started this discussion. Last reply by Sharon Malone-Dugan Jan 24, 2010. 13 Replies 0 Favorites
Cheri Gunvalson's Page
Latest Activity
Cheri Gunvalson commented on David Stalling's blog post Late Night Confessions: (Are Hope and Truth Compaitible?)Cheri Gunvalson replied to Kathi Kinnett's discussion If you had a chance to ask researchers, providers or industry any question at all about clinical trials, what would it be?"http://www.sciencedaily.com/releases/2012/05/120504110554.htm ;
Hi Kathi,
If you have anyone from this study presenting please ask when they think this might be going to human trials. Thanks"
Cheri Gunvalson replied to Chad Campbell's discussion Newly Diagnosed"Hi Chad,
I was like you reading anything I could find and in 1999 there was not much out there. I though you might like to hear that there are boys with DMD living a full life as young men. Our son Jacob will be 21 this fall and is…"
Cheri Gunvalson replied to Sherri Hadley's discussion Lung Function"Richard, thank you for sharing your experience. Cheri"
Cheri Gunvalson replied to Rupjani B's discussion Project Catalyst : what is the present status of their utrophin upregulation drug candidate"This alliance has just recently started and has made great strides. One of the best things is the non profits and NIH all had different application forms and this was very time comsuming. The allieance is working with NIH to have a…"
Cheri Gunvalson replied to JUAN PEDRO ARBULU's discussion Heart Failure Drugs Preserve Muscle in Muscular Dystrophy"I agree this is very exciting. Our son with who is 20 is actually on both of these drugs. One thing to keep in mind is I am sure the boys in this study are monitored closely for example spironolactone can affect potassium…"
Cheri Gunvalson replied to Sherri Hadley's discussion Lung Function"Hi Sherri,
Our son with DMD had his first sleep study at age 15 when having his appointments with De Wong. They are using the Bi pap at night for DMD boys even when thier PFT's ie lung function is normal to preserve lung function and it…"
Cheri Gunvalson joined Amrit's group
Exon skipping 53
Hi,My son has deletion 48-52 and need 53 skipped. Want to get in touch with any one who needs 53 skipped.Thanks,AmritSee More
Profile Information
- About me:
- I have a husband and 3 kids, 1 16 yo with DMD. I am a RN.
- About my family:
- My husband John is a farmer, Ben is a college student studing mechanical engineering, Kelsey is our 14 yo pianist. Jacob, our son with DMD, is an artist and poet. Jacob recently won at the regional level the Poets Out Loud contest and will be preforming at the state competetion. Jacob was the boy the Late Senator Wellstone and Congressman Collin Peterson which spurred them to author the MD CARE Act. Jacob has paintings in many offices on capitol hill of the people who work there who have grown to care deeply for him.
- Age(s) of child(ren)/individual(s) with Duchenne:
- 13-18
- City and State:
- Gonvick
- Country:
- USA
Cheri Gunvalson's Photos
Cheri Gunvalson's Videos
Comment Wall (6 comments)
- At 2:18am on April 11, 2010,
Rita Felling said… - Thanks for your comments on my blog. I just read your profile and that is so wonderful to hear about Jacobs talents. So happy for him.
I am actually facing our next big challenge to move to a more handicap accessible house. I have finally surrendered to no longer being able to carry my son Cody up steps anymore. Funny, I think the adjustment is harder on me than him.
- At 9:48pm on March 3, 2010,
Veronica E. said… - Cheri, this is a super obnoxious question, but are you related to Vicky Gunvalson from Real Housewives of OC? That show is my guilty pleasure.
I love reading about young men with Duchenne who are artists. My mom's cousin was also a painter. I'd love to see some of your son's work. :)
- At 11:16am on January 16, 2010,
meeta sharma said… - thanks cheri for sharing that with me. i am sure there is a easier way to let my son about DMD. but i am not able to muster up enough courage. i am sure that he also has a fair idea about his condition and seems to me that he would able to handle it very bravely.
thanks again.
regards
meeta sharma
- At 12:38pm on April 14, 2009,
Kim Innabi said… - Thank you Cheri. I will be in touch, I'm sure!
- At 12:30am on April 12, 2009, Kim Innabi said…
- Hi Cheri:
Thank you so much for sharing your experiences with Permobil and the standing feature. It's so helpful to get opinions from parents who are actually using the equipment. California does not typically pay for standers, so in order to get it, I have to probably have a hearing in court. I haven't seen a demo of any wheelchairs at all yet. I have heard good and bad things about the stander as part of the chair, and I was a bit confused about it's entire purpose (theraputic only, or also functional to raise to standing position at any time as well). I think that is actually the elevator feature? I will keep your comments in mind when we finally get the chair.
Thanks again for responding to my post. I think we met in the cafeteria in Washington DC in 07 (I was with Julie Garcia). My memory isn't that great, but I do remember you because of what a great advocate you are (and how you got your rep to finally sign-on to the MD Care Act). All the best to you!
Kim
- At 6:39pm on March 30, 2009,
Laurie Barton said… - Hi Cheri,
I can send you the floor plans for the 2 accessible bathrooms we designed. These are the 3rd & 4th bathrooms we've designed; each one meet my son's changing needs. These designs include a roll in shower, roll under sink for ease in brushing teeth, washing hair etc whether my son does the task or I help do it. The plans are spaced so they can drive in and park at the sink...or we can roll them into position with the Hoyer lifts. It's important that there be enough space between the toilet and the wall (48") to accommodate the width of the lift, handle, and my hand if I have to crank the lift. This depends on the style of the lift you will be using. Open space for maneuvering is the next most important factor.
I don't know how to attach the floor plan file to this message. If you want to send an email to me at my personal address, I can send you the bedroom floor plans and the closet plans, too. lauries.info@gmail.com
Laurie
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