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PPMD Community

a forum for families and friends of people with Duchenne

http://community.parentprojectmd.org/

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PPMD Community | community.parentprojectmd.org Reviews
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a forum for families and friends of people with Duchenne
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PPMD Community | community.parentprojectmd.org Reviews

https://community.parentprojectmd.org

a forum for families and friends of people with Duchenne

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community.parentprojectmd.org community.parentprojectmd.org
1

Discussions - PPMD Community

http://community.parentprojectmd.org/forum/categories/education-1/listForCategory

Hi All, Andrew is 6 1/2 years old and is in the first grade. We are concerened, we have been for awhile, that he is so far behind in everyt. Started by Alissa Latest Reply. Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Recess. 2nd Grade. Balls Flying. Fast Running 2nd-5th graders "swooshing" past from behind. The Aide is chatting with the recess monitor. N. Reply by Lori Ware.

2

What is the cost of translarna? - PPMD Community

http://community.parentprojectmd.org/forum/topics/what-is-the-cost-of-translarna

What is the cost of translarna? What is the cost of translarna? Anybody have any idea? 0 members favorited this. Replies to This Discussion. On May 16, 2015 at 5:08pm. The cost in Europe about 3800 Euro, 30 sachets of Translarna 125 mg. Reply by Trinh Nguyen. On May 17, 2015 at 11:05pm. 1 box of 30 tablets 125mg : 3822 Euro. 1 box of 30 tablets 250mg : 7588 Euro. 1 box of 30 tablets 1000mg : 30180 Euro. Reply by Elie Feghali. On May 18, 2015 at 2:13am. It is an unreasonable cost! Reply by Trinh Nguyen.

3

Dee's Page - PPMD Community

http://community.parentprojectmd.org/xn/detail/u_1vpdexnwehxjk

0 members favorited this. Its can be an A-Ha moment. Started Jan 8, 2015 0 Replies. Tim Bird's CELEBRATION OF LIFE Memorial on 9/28. Started Sep 10, 2013 0 Replies. Started Mar 21, 2013 0 Replies. Single and dealing with …. Living with Duchenne (ag…. A group for Mom's who like to vent and talk about life with DMD kids. Group Mom's Cafe. Andrea, I can't get that Facebook link to work can you re-post it, thanks! Group Mom's Cafe. Group Mom's Cafe. Group Mom's Cafe. Group Mom's Cafe. Group Mom's Cafe. Thank...

4

Blogs - PPMD Community

http://community.parentprojectmd.org/profiles/blog/list

All Blog Posts (1,551). PDUFA VI and Its Impact on Duchenne. On Friday, PPMD submitted additional comments. To the latest version of PDUFA VI. At this point, there are few members of our Duchenne community who haven’t heard the acronyms ‘PDUFA’ or. Added by Annie Kennedy. On August 19, 2016 at 1:38pm No Comments. Understanding Gene Therapy and CRISPR/Cas9: Upcoming Clinical DMD Symposium. Added by Abby Bronson. On August 12, 2016 at 10:09am No Comments. Understanding ABLE Programs and How You Can Benefit.

5

Oxygen and Duchenne – PPMD Community

http://community.parentprojectmd.org/m/blogpost?id=1187424:BlogPost:166838

Feb 12, 2013. The new section of the card reads:. Do Not Give Oxygen. Without checking end-tidal or blood CO2 level. A low hemoglobin saturation may indicate CO2 retention and a need for positive pressure ventilation. IF. Supplemental oxygen is given, please monitor CO2. Non-invasive ventilation may be required. Why can supplemental oxygen be so dangerous in patients with Duchenne? Please keep this emergency card on hand. Kathi Kinnett, MSN, CNP. Vice President, Clinical Care. Read more PPMD Blogs.

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mistyvanderweele.blogspot.com mistyvanderweele.blogspot.com

Misty's: Lion King Is Potty Trained

http://mistyvanderweele.blogspot.com/2009/07/lion-king-is-potty-trained.html

Welcome to Misty's Place. Friday, July 3, 2009. Lion King Is Potty Trained. When I was potty training my son it took months. And several tries because he could care less. About being potty trained.that is until I found his. I had just taking him to see his. First" theater movie.he LOVED it. When the VHS came out in stores.DVD's hadn't hit the scene. Yet I immediately purchased it.little did I know. I held the secret weapon to my son's discipline and the. Holy grail of diaper f.ree days in my hands! 100% ...

ourfightdmd.blogspot.com ourfightdmd.blogspot.com

Our Fight - Living with Duchenne Muscular Dystrophy: June 2012

http://ourfightdmd.blogspot.com/2012_06_01_archive.html

Our Fight - Living with Duchenne Muscular Dystrophy. Saturday, June 23, 2012. On May 25th Jocelyn had a blood draw for genetic testing to see if she is a carrier of the DMD gene. The test results came back postive stating: Mutation detected. A deletion mutation in the DMD gene empassing exon 46 was detected. We have not told her the results. We are going to wait for her to ask. I'm worried about telling her. I hate that she will think about it for several years to come. I just want her to...Next time I r...

ourfightdmd.blogspot.com ourfightdmd.blogspot.com

Our Fight - Living with Duchenne Muscular Dystrophy: April 2012

http://ourfightdmd.blogspot.com/2012_04_01_archive.html

Our Fight - Living with Duchenne Muscular Dystrophy. Thursday, April 19, 2012. I will be doing a medical update on Logan's April 3rd follow-up appoitment soon. After every appointment I receive a copy of the dictation from our doctor. I'm waiting on that report before I post my update. Subscribe to: Posts (Atom). Cincinnati MDA Muscle walk March 24, 2012. View my complete profile. 5/25/2012 - Blood draw on Jocelyn for genetic testing to see if she is a carrier of Duchenne Musclar Dystrophy. 10/5/2011 - H...

mistyvanderweele.blogspot.com mistyvanderweele.blogspot.com

Misty's: Moose Are Stupid

http://mistyvanderweele.blogspot.com/2009/07/moose-are-stupid.html

Welcome to Misty's Place. Friday, July 3, 2009. During a swift rain/hail storm. On Sunday after noon a Mamma and. Her twin baby moose coming hoofing. Through my front yard.(one of the beauties. I jumped up and grabbed my camera, those. Babies are so darn cute! I noticed immediately that it was the same. Mamma that comes back every year. I swear. She must be part rabbit because she always. Now it is common knowledge that moose are stupid. And anyone that has been around moose. To change my mind.= =.

prayingfortay.blogspot.com prayingfortay.blogspot.com

Taylor: MERRY CHRISTMAS!!!

http://prayingfortay.blogspot.com/2009/12/merry-christmas.html

Friday, December 25, 2009. Subscribe to: Post Comments (Atom).

mistyvanderweele.blogspot.com mistyvanderweele.blogspot.com

Misty's: Motivation in... Unlikey Places, HMMM???

http://mistyvanderweele.blogspot.com/2009/07/motivation-in-unlikey-places-hmmm.html

Welcome to Misty's Place. Tuesday, July 21, 2009. Motivation in. Unlikey Places, HMMM? The other night my son said "MOM, you've got. To watch this. It's like American Idol only with all. Kinds of talent and no Simon". As I watched grandpa want-to-be disco star, the. X2 twin hip hoppers and the Bad Girls and boy were they bad! I was thinking why the heck am I watching this? Don't get me wrong it was entertaining but I. Could think of a million other things I could be doing. The beauty was unbelievable,.

prayingfortay.blogspot.com prayingfortay.blogspot.com

Taylor: Going home

http://prayingfortay.blogspot.com/2009/10/going-home.html

Sunday, October 18, 2009. Subscribe to: Post Comments (Atom). This is everything hes connected to. We have a surgery time.Monday 8:30-4:30 at Prima.

parentprojectmd.org parentprojectmd.org

Email - End Duchenne eNews - Celebrating Independence - Parent Project Muscular Dystrophy

http://www.parentprojectmd.org/site/MessageViewer?em_id=23882.0

Teach Others About Duchenne. What We Are Funding. Annual Conference and Meetings. Run For Our Sons. Coach To Cure MD. Create a Personal Page. My Donor Portfolio™. Other Ways to Help. Teach Others About Duchenne. What We Are Funding. Run For Our Sons. Coach To Cure MD. Create a Personal Page. My Donor Portfolio™. Other Ways to Help. View this email online. This pre-meeting addressed issues important to the adults with Duchenne in our community, as well as parents of kids who will one day be facing some of...

babyloveblessings.blogspot.com babyloveblessings.blogspot.com

Boy Blessings: Updates

http://babyloveblessings.blogspot.com/2012/07/updates.html

Living life with Duchenne Muscular Dystrophy. Monday, July 9, 2012. I didn't realize how long it had been since I last posted until my mother-in-law said something about it the other day. Life has just been so busy. Ben had an appointment today with his Orthotist. He has outgrown his night splints and needed to be casted for new ones. The appointment went smoothly and we should be able to pick them up in a few weeks. We have been doing a lot of swimming this summer, which is not just fun, but therapeutic...

babyloveblessings.blogspot.com babyloveblessings.blogspot.com

Boy Blessings: Protandim

http://babyloveblessings.blogspot.com/2011/10/protandim.html

Living life with Duchenne Muscular Dystrophy. Friday, October 7, 2011. There is a supplement that I have heard about off and on since we started our DMD journey. It is called Protandim. From what I understand (which isn't much), Protandim is a supplement that you can take alongside the other vitamins and supplements we already take. It is supposed to reduce oxidative stress or neutralize the free-radicals that our bodies produce every day. From www.Protandim.com:. He can walk, but gets tired;. Walks up t...

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PPMD Designates UC Davis a Certified Duchenne Care Center. On April 6, 2017 at 12:30pm 0 Comments. Today Parent Project Muscular Dystrophy (PPMD) named UC Davis Department of Physical Medicine and Rehabilitation. Neuromuscular Disease Clinic (UC. Add a Blog Post. Welcome to the PPMD Community. Getting started is easy. Just click one of the icons below. Started by Sampreet in General Discussion. By Sarada Kuchibhotla on Saturday. 1 Reply. Started by Sarada Kuchibhotla in General Discussion. For stuffed no...

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CAP's Community Forum. From Steve on Being a “Champion of Change”. Steve DeWitte Recognized by White House. March 25, 2015. Congratulations to Steve DeWitte for being recognized by the White House as a Champion of Change:. Https:/ www.whitehouse.gov/champions/parkinson’s-disease/steve-dewitte. February 26, 2015. We have sold out of tickets for the Gala! Saturday, March 21st, 2015. Glastonbury Hills Country Club. 239 Country Club Road. South Glastonbury, CT 06073. Dinner, Open Bar, Dance, Silent Auction.

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