Ryan Fischer's Blog (94)

70 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

We are pleased to report our final numbers for the FY19 letters.

 

In total, 19 Senators signed onto the Senate FY19 letter, joining 51 members of the House. That makes a solid 70 members of Congress (House and Senate combined) sending a strong message of support behind Duchenne research, public health, drug development, and patient support initiatives. They provide strategic direction for the federal agencies that touch Duchenne. Given the…

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Added by Ryan Fischer on April 16, 2018 at 11:30am — No Comments

End Duchenne Tour Recap: Grand Rapids, MI

PPMD was excited to head to the Midwest for the second stop on the 2018 End Duchenne Tour. The event took place at Western Michigan University in Grand Rapids, Michigan, in…

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Added by Ryan Fischer on March 28, 2018 at 4:30pm — No Comments

ADD YOUR VOICE: Participate in PPMD’s Gene Therapy Survey



Patient-Focused Drug Development in action



Companies developing gene therapies, the FDA, and other stakeholders are interested in the treatment priorities of the Duchenne community.  Because of this, PPMD has collaborated with RTI…

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Added by Ryan Fischer on March 14, 2018 at 1:30pm — No Comments

End Duchenne Tour Recap: Morristown, NJ

PPMD kicked off the 2018 End Duchenne Tour with a stop in our very own backyard - Goryeb Children's Hospital in Morristown, New Jersey! PPMD was extremely grateful to partner…

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Added by Ryan Fischer on February 15, 2018 at 2:30pm — No Comments

PPMD's 2018 Advocacy Conference | Schedule of Events

The PPMD Advocacy Conference registration is live! Join us March 4-6 in Washington DC to advocate for Duchenne…

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Added by Ryan Fischer on January 23, 2018 at 4:50pm — No Comments

VIDEO: Fundamentals of Access to Duchenne Therapies

Navigating access to approved therapies can be both time consuming and daunting. The time between approval by FDA to the day of a patient’s first commercial dose can vary depending on which insurance you have, your age…

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Added by Ryan Fischer on November 20, 2017 at 8:00pm — No Comments

PPMD’s #EverySingleOne Tour: Boston, MA

Boston made for a great location for our October Every Single One Tour stop. Nothing beats the northeast in the fall. Boston is home to a number of great Duchenne…

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Added by Ryan Fischer on October 30, 2017 at 2:00pm — No Comments

PPMD Launches New Resource Center for Families

Navigating life with Duchenne can be daunting and time consuming for families. We rely on each other to share wisdom and information in order to make the process smoother and life a bit easier. The best guidance we can get is from those who have been through a given situation, sharing what they’ve learned to help others navigate resources that exist.

 

PPMD strives to find…

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Added by Ryan Fischer on June 21, 2017 at 10:00am — No Comments

65 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

With Congress not wrapping up spending bills for Fiscal Year 2017 until we were more than 7 months into the fiscal year, the FY 2018 budget and appropriations (funding) cycle will be interesting to say the least. The Trump Administration released a preliminary — or “skinny” budget -- in March but…

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Added by Ryan Fischer on June 15, 2017 at 11:30am — No Comments

URGENT Action Alert – Call Congress Now Before This Afternoon’s AHCA Vote!

The newest version of the GOP HealthCare Bill is coming to a vote by 1:30 PM EDT this afternoon!

This is moving fast and we need ALL MEMBERS of our community to …

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Added by Ryan Fischer on May 4, 2017 at 12:00pm — 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…

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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…

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

Register for PPMD's 2017 Advocacy Conference | February 12-14 in Washington, DC

 

You are invited to join us February 12-14, 2017 in Washington D.C. for what is going to be another critical year in Duchenne advocacy.

 

Register Now

 

2016 marked a tremendous…

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Added by Ryan Fischer on October 20, 2016 at 1:00pm — No Comments

PPMD’s #EverySingleOne Tour: Denver

This past weekend marked the third and fourth stops on PPMD’s Every Single [One] Tour – one taking place at Denver Children’s (University of Colorado) – one of…

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Added by Ryan Fischer on August 23, 2016 at 12:00pm — No Comments

Getting Results: Success from your Advocacy efforts in February!

Thanks to your advocacy, this week we learned that all of the Duchenne priorities we advocated for this year with Members of Congress are one step closer to being included in next year’s budget.

 

Whether you traveled to DC for face-to-face meetings with members, or advocated from…

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Added by Ryan Fischer on June 10, 2016 at 12:00pm — No Comments

Senate Sends Strong Letter to FDA about Duchenne Therapies

Bipartisan Group of Senators Urge FDA to Utilize All Available Tools to Speed Access to Promising Duchenne Therapies

 

On Friday April…

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Added by Ryan Fischer on April 18, 2016 at 9:44am — No Comments

ACTION ALERT: Please urge Your Senators to Sign Letter to FDA – Applying FDASIA Tools to Duchenne

Earlier this year, 109 members of the House of Representatives sent a powerful letter to the FDA urging them to “utilize all available tools, resources, and authorities” in reviewing a treatment for Duchenne muscular dystrophy. Congressional champions Congressmen Mike Fitzpatrick (R-PA),…

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Added by Ryan Fischer on April 5, 2016 at 11:30am — No Comments

How You Can Help with the Upcoming Ad Comm for Eteplirsen – Every Single Voice Matters!

We are just a few short weeks from the FDA Advisory Committee Meeting for eteplirsen on April 25th. PPMD is part of a united coalition of Duchenne organizations (MakeDuchenneHistory Coalition) working together to ensure we make the…

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Added by Ryan Fischer on April 4, 2016 at 10:30am — 1 Comment

ACTION ALERT: Urge Lawmakers to Keep Driving Progress in the Fight to End Duchenne

Urge your Lawmakers to Sign the FY 17 Duchenne Appropriations Letter!

 

Today and tomorrow, scores of PPMD advocates will be on Capitol Hill to urge their Senators and Members of Congress to…

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Added by Ryan Fischer on February 22, 2016 at 1:43pm — No Comments

Congress Calls on FDA to Increase Efforts to Treat Duchenne



Thanks to this incredible community urging lawmakers, well over 100 Members of Congress signed and submitted a letter …

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Added by Ryan Fischer on February 18, 2016 at 2:40pm — 1 Comment

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