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PPMD Awards $70,000 Grant to Talem Technologies as Part of Robotics Initiative

Posted by PPMD on July 20, 2015 at 10:00am 0 Comments

Grant Will Be Used to Support Pilot Study for X-Ar Exoskeletal Arm Technology

Parent Project Muscular Dystrophy has awarded Talem Technologies a grant for over $70,000 to support a pilot study of their…


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No steroids ... Any other options?

Started by Mirtha in Research. Last reply by wainaina muiruri on Thursday. 6 Replies

Deflazacort from UK

Started by Trinh Nguyen in Research. Last reply by Trinh Nguyen on Thursday. 2 Replies

fearful of the future

Started by Leresa in General Discussion. Last reply by Tracy Carbaugh on Wednesday. 1 Reply

All Alone

Started by Maria Isabelle Salamon in Grief and Loss. Last reply by Moises J. Ramos Jul 16. 4 Replies

Latest Activity

PPMD posted a blog post

Masters: Deflazacort Personal Importation

Masters now has an increasing supply of Deflazacort.  However, due to recent regulatory changes, families should now allow 3 weeks from submission of their order to receipt of drugs.  (if drug are needed more urgently, this may be possible for an additional $80 charge).  All orders should be placed online, and documents e-mailed or faxed to the Masters UK office with the referenced online order number.  (fax number: 011 44 208 3818)  In the event that ordering online is not possible, ordering…See More
4 hours ago

PPMD posted an event

Ducky Derby for Duchenne at Mesquite Groves Aquatic Center

September 19, 2015 all day
The fifth annual Ducky Derby for Duchenne will take place on September 19th in Chandler, Arizona. We look forward to watching your adopted ducks cruise the lazy river and finding out who will cross the finish line first! Prizes are available for the first three finishers as well as a prize for the most ducks adopted at one time! Check out the Ducky Derby website for more information!See More
8 hours ago
Anne Dowell is attending PPMD's event

World Duchenne Awareness Day at Global

September 7, 2015 all day
People around the world will help participate in the second annual World Duchenne Awareness Day on September 7. Over the coming months, we will tell you about exciting ways you can mark this international event. Every day, each of us works to fight Duchenne in our families and in our communities, and we’re making an impact. Imagine the impact we can have if we work together as a global community? Help us make…See More
Anne Dowell shared PPMD's event on Facebook
Jason Darienzo replied to Jason Darienzo's discussion Summit Therapeutics Publishes Preclinical Data second generation utrophin modulator
"Journal of Human Molecular Genetics Second-generation compound for the modulation of utrophin in the therapy of DMD http://hmg.oxfordjournals.org/content/early/2015/05/18/hmg.ddv154.full?sid=65c7a3b0-1c67-490b-b8d0-d91e59d48742"
Jason Darienzo posted a discussion
amit joined PPMD's group
wainaina muiruri replied to Mirtha's discussion No steroids ... Any other options?
"Hello Dakota.I trust you are well.Have you ever had temperament and weight problems with the steroids.I had my son on them but had to stop after two months because his weight shot up rapidly and he had a really bad temper.What can one do to mitigate…"
Trinh Nguyen replied to Trinh Nguyen's discussion Deflazacort from UK
"Hi Andrea. They said "The license we need is the pharmacy license and a license that allows the pharmacy to import the medication." They used to supply me Deflazacort manufacturered by Sandoz-Spain. Sandoz have office in Vietnam, but I…"
Andrea Cleary replied to Trinh Nguyen's discussion Deflazacort from UK
"What does Master's say about it? I know one manufacturer is Sandoz, perhaps their license will please the government? "
Dakota Ferrazzi replied to Mirtha's discussion No steroids ... Any other options?
"i have been on steroids since i was 3 years old.. I'm now 20 years old and still walking… putting your son on steroids and hopefully getting the eteplirsen could allow him to live a normal happy life."
Tracy Carbaugh replied to Leresa's discussion fearful of the future
"My advice is to slow down. Take one day at a time. Each stage will be different and have its own struggles. They will build on one another, preparing you for the next stage. By the time your child reaches adulthood, you will have grown and matured…"
Profile IconYvonne Engels, Anne Dowell and Arla Nelson joined PPMD Community
Jul 21
Leresa posted a discussion

fearful of the future

OK so I'm a 25 year old single mother. I am terrified of the future because I know that Mj is only going to get heavier and weaker. I have little experience in caring for a dependent adult. Granted he's only seven now and easy to lift, carry, maneuver. But what about when I am no longer to do these things by myself. Is there any prep courses or classes that I taketake? I was thinking that I should get cna certified or somethin. Any help would be greatly appreciated.
Jul 21

PPMD posted blog posts
Jul 21
Trinh Nguyen posted a discussion

Deflazacort from UK

I have ordered Deflazacort from UK through Master for 4 years. But now suddenly, they request License from Pharmacy. In our country only big pharmaceutical company can import meditation (The meditation visa need to be approved by government). Don't know how to get now. Anybody can give me some advice? Much thanks.See More
Jul 20

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