June 2012 Blog Posts (11)

high hope from isreal

my 7 year old son, jonathan has duchenne. he is taking far too many vitamin and prednison .  i hope soon there will be some drugs that will end duchenne. keep up the the spirit and wonderfull  gob ppmd are doing. we should learn from ppmd how to push  things in israel, like the awernes of people to duchenne. and raise mony for the reaserch. help us pleas.

Added by adi hazan on June 28, 2012 at 1:12am — No Comments

A question for parents of children in the 51 skipping trials

Hello PPMD Community, my husband and I are sitting here discussing exon skipping... are there parents out there whose sons are involved in current 51 trials, specifically GSK/Prosensa trials? AVI has been pretty forthcoming with their results but we have a hard time finding info on GSK's.   We are wondering what your experiences have been and if you see benefits in your sons (for those in either trials)?

Added by Claire Diemler on June 25, 2012 at 10:23pm — No Comments

PPMD to Host First Transforming Duchenne Care Meeting

PPMD is pleased to host the first Transforming Duchenne Care Meeting, June 27-28, 2012, immediately preceding the Annual Connect Conference in Fort Lauderdale. The goal of the Transforming Duchenne Care Meeting is to bring together leadership from…


Added by Will Nolan on June 25, 2012 at 10:00am — No Comments

Results from 2012 Advocacy Efforts- Success on Senate Appropriations!

Last week, the Senate Appropriations Committee approved its version of the bill that would fund many key agencies, including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), in FY 2013.  Thanks to the hard work of PPMD advocates, the bill reflects a number of our priorities.


At the CDC, Senators strongly objected to the administration’s proposal to consolidate the many programs within the National Center on Birth Defects…


Added by Ryan Fischer on June 22, 2012 at 1:14pm — 1 Comment

AVI BioPharma and PPMD team up to run the Rock 'n' Roll Seattle Marathon

Run For Our Sons (PPMD's endurance program) is teaming up with AVI BioPharma in Saturday's Rock 'n' Roll Seattle…


Added by Nicole Herring on June 20, 2012 at 4:00pm — No Comments

My Voice: Elizabeth Heller, 25 years old

Elizabeth Heller, is a woman living a full life – student, activist, wife – and does it all, living with Duchenne. Considered to be a disorder that predominantly affects males, Elizabeth is an exception. Each year, Elizabeth joins PPMD in Washington to tell her story and…


Added by Will Nolan on June 14, 2012 at 11:00pm — 2 Comments

June Note: Time to Connect

It’s the official start of summer. And for our community, it’s that time of year when we come together with caregivers, scientists, and industry for PPMD’s Annual Connect Conference. This year’s agenda is quite astonishing, reflecting the vast number of therapies in the works, the updates to care, our increased presence in Congress, and a panel series that will dissect the clinical…


Added by Pat Furlong on June 14, 2012 at 11:00pm — No Comments

Measuring Up (Two Moms, Co-Blogging)

We all feel like we are being held up to some predetermined standard – whether it is at our job, in school, or just walking down the street. In Duchenne, we compare our sons to other people’s sons, to others with Duchenne. But who is to say what is right or normal? In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy…


Added by Pat Furlong on June 14, 2012 at 10:30pm — 1 Comment

I am looking for anyone that can help me in obtaining a mobility van for my 17 year old son. He has many appointments that I need to take him to and the taxis are getting costly and we are having to …

I am looking for anyone that can help me in obtaining a mobility van for my 17 year old son. He has many appointments that I need to take him to and the taxis are getting costly and we are having to wait long periods of time. He is scheduled for a gtube insertion next week due to him losing too much weight. I would greatly appreciate hearing from someone on this matter. thank you, God bless you!!!


Added by Beatrice Cortes on June 13, 2012 at 3:55pm — No Comments

PPMD Leads Critical Letter for Rare Disease Community

Parent Project Muscular Dystrophy (PPMD) has teamed up with EveryLife Foundation for Rare Diseases and Genetic Alliance to galvanize the rare disease community and send a strong message to…


Added by Ryan Fischer on June 13, 2012 at 3:00pm — No Comments

Weeks 4-6 - One Step to End Duchenne

Ending my sixth week at over 700 miles!!! Passed the 500 mile marker and still going.





Added by Tim "1Step" Rice on June 7, 2012 at 3:03pm — No Comments

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