December 2016 Blog Posts (12)

Make my parents pay--48 hours left!

We’re so close to our goal to fund CRISPR/Cas9!…


Added by PPMD on December 29, 2016 at 9:30am — No Comments

This could help me--and everyone with Duchenne

Your donation will be DOUBLED. Now is the moment to give.…


Added by PPMD on December 22, 2016 at 9:12am — No Comments

DOUBLE your investment in the future

Help us raise $250,000 by 12/31!…


Added by Abby Bronson on December 20, 2016 at 12:00pm — No Comments

Understanding the Path to Access – Resources for the Community

We have all had frustrations getting healthcare paid for, whether it is getting access and coverage for appointments, procedures, equipment, and/or medications.

Coverage is especially difficult when new medicines or procedures are recommended. Parents, patients, and medical providers spend hours putting together documents and…


Added by PPMD on December 19, 2016 at 12:30pm — 1 Comment

I Will Match Your Gift

Help us raise $250,000 to fund CRISPR/Cas9.

After a few months of relative quiet, noise has returned to the Killian house in full force! For the holidays, all five kids are back under one roof with a revolving door of friends and endless groceries. Even with all the chaos that entails, this is my favorite time of…


Added by PPMD on December 13, 2016 at 9:38am — No Comments

New Paper Further Validates Need for Annual Cardiac MRI Surveillance in Duchenne

When PPMD convened the Contemporary Issues in Duchenne Cardiology meeting with National Heart, Lung, and Blood Institute (NHLBI) in July 2014, there were several recommendations.

The strongest recommendations included the use of cardiac MRI as the gold standard for cardiac surveillance and…


Added by Kathi Kinnett on December 8, 2016 at 4:00pm — No Comments

PPMD Is Seizing This Moment to Explore the Potential of CRISPR/Cas9 in Duchenne

It is the holidays – time for giving and laughter and hope. Hope comes in many forms, but I would imagine that for many reading this blog, hope comes in the form of a cure for Duchenne.  

Could CRISPR/Cas9 offer hope for treating Duchenne? 

As background, CRISPR/Cas9 is a…


Added by Abby Bronson on December 8, 2016 at 3:30pm — No Comments

How PPMD’s Certified Duchenne Care Centers Are Improving Quality & Access to Care

When I joined PPMD in 2012, care for Duchenne was all over the map. 


Sadly, there were over 150 clinics spread across the US, but there was no oversight of these clinics – the community did not know who was providing care, the level of care being provided or whether anyone at the clinic actually knew anything about…


Added by Kathi Kinnett on December 8, 2016 at 3:02pm — No Comments

BREAKING NEWS: 21st Century Cures Crossed Over the Finish Line!

The Duchenne Community’s Voice Was Essential Every Step of the Way & Contains PPMD’s Provision to Strengthen Patient Focused Drug Development Efforts

To everyone in our PPMD community who called, reached out, emailed, and met with your elected officials – WE DID…


Added by Annie Kennedy on December 7, 2016 at 2:30pm — No Comments

PPMD’s #EverySingleOne Tour: Durham

Duke University marked our final stop on PPMD’s 2016 Every Single One Tour, held on November 2. We were thrilled to be holding another tour stop at one of PPMD’s Certified…


Added by Ryan Fischer on December 7, 2016 at 11:04am — No Comments

Light up the Lines!! Urge Your Senators to Vote YES on 21st Century Cures!

We need you to call your two US Senators TODAY with one simple message – VOTE YES ON 21st CENTURY CURES!!


With just days remaining in the current Congress, this bill represents the extraordinary efforts of our PPMD community’s work and outreach with Congress. We are delighted to report that the version in…


Added by Ryan Fischer on December 5, 2016 at 10:07am — No Comments

Your gift to CRISPR will be Matched!

We have so much momentum. Let’s seize this moment.

First of all, let me say THANK YOU! Your gift to PPMD on #GivingTuesday helped us surpass our goal, and we could not be more grateful. It is a wonderful way to kick off our holiday season—and we wanted to make sure you were among the…


Added by Pat Furlong on December 1, 2016 at 9:30am — 1 Comment

Monthly Archives















Need help using this community site? Visit Ning's Help Page.



© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service