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Latest Activity

Najat Azar joined Dee's group

Mom's Cafe

A group for Mom's who like to vent and talk about life with DMD kids
3 hours ago
Keith & Jill VE replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"Glad to hear you are able to continue receiving the drug! Still puzzled by PPMD's defeaning silence on this issue.  This is the EXACT problem with health insurance (not healthcare) in the US.  This unethical behavior by drug and…"
tracie replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"My son was approved right away by Medicare. We used to pay less than $200 for a 90 day supply of Deflazacort we purchased from Masters Pharmaceuticals in the UK. Now...we personally pay $0/month for Emflaza...but my son's Medicare Rx insurance…"
JESSICA Resnick-AULT posted a discussion

Equipment & adaptive technology available

Folks: My husband, Peter, had Duchenne and died earlier this year at age 33. We live in the greater NYC area. I have given away much of his equipment to friends and organizations locally, but still have a lot of adaptive technology available. Glad to sell to anyone for best offer in NY or Boston and can ship smaller items. With inquiries, please email me at jrault at gmail dot comITEMS THAT CAN BE SHIPPED:1. New in box Jouse2. Used Jouse with new mouth parts3. Chattervox, used in good…See More
Profile IconJESSICA Resnick-AULT and Cem ateş joined PPMD Community
Michael Piacentino posted photos
Alex Toalson favorited Annie Kennedy's profile

PPMD posted an event

[Webinar] MoveDMD Trial Open-Label Extension Results at Online Webinar - Eastern Time Zone

October 25, 2017 from 1pm to 2pm
Please join Parent Project Muscular Dystrophy and FibroGen as we host a webinar Wednesday, October 25 at 1:00 PM EDT to hear a community update on FibroGen’s development of Pamrevlumab and currently enrolling FGCL-3019-079 non-ambulatory study in Duchenne muscular dystrophy. Host:Kathi Kinnett, MSN, CNP Senior Vice President, Clinical Care Parent Project…See More
Profile IconJanet Budzilek and Christie Castaneda joined PPMD Community
ven commented on Abby Bronson's blog post Gene Transfer in the Spotlight
"Great Info on new research happening for DMD. Hope we see cure soon for our kids."
Oct 18

Kathi Kinnett is attending PPMD's event

For Clinicians: PPMD Duchenne Clinician Care Conference at Sanibel, FL

January 24, 2018 to January 26, 2018
Save the date! This year, PPMD will be hosting our first Duchenne Clinician Conference, January 24-26, 2018 at the Marriott Harbor in Sanibel, FL. Registration is planned to open by October 1.This conference will provide up to date clinical education, resources, materials and networking, supporting your ability to provide the very best care to your patients and families living with Duchenne.Our robust agenda will cover comprehensive care and services for Duchenne at all stages of the diagnosis,…See More
Oct 17

Partner Information
PPMD Partner Information posted a blog post

Understanding Duchenne: Preventing CGTF & Fibrosis

In many diseases, the development of fibrosis in muscle, or any tissue, is the result of a reactive, or faulty tissue repair process involving many factors. In Duchenne, fibrosis is present in skeletal muscles at a very early age and is one of the major factors contributing to the loss of muscle strength and function. Fibrosis…See More
Oct 17
Profile IconJennifer M. Bey and Kristen Stephens joined PPMD Community
Oct 17

PPMD posted a blog post
Oct 17
brian phillip nicholoff favorited Kathi Kinnett's blog post PJ Nicholoff Steroid Protocol Published
Oct 16

Ann Martin posted a blog post

Your DuchenneConnect Registry Data is Advancing Research! New Publication

Do you ever wonder what happens to all the data we collect in the DuchenneConnect Registry? Ever wonder why we regularly ask you to update your registry account?How your data is used:Your data is used in many ways. Frequently researchers working in the…See More
Oct 16

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