Educational Resources

@pcdfoundation3246 Learn about clinical trials

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PCD family shares their experience. Featuring the Shook Family and Children’s Minnesota Hospital.

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Presented by:
Michele Manion, PCD Foundation

Join us for a discussion with Michele Manion, who will be sharing the latest in PCD, including an update from a recent Global PCD Patient Organization Summit, an effort to come together as a global community to build resources, strategies and a collective voice.

Don’t miss out on the chance to stay informed and engaged—your participation is vital to advancing knowledge in PCD!

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Oct 25, 2024 12:00 PM

DescriptionPresented by:
PCD Foundation
Michele Manion
Guests speakers:
Ashley Barber, RN
Melanie Collins, MD
Michael D. Davis, RRT, PhD, FAARC
Catherine Sanders, MD

Join us for a discussions on:
*The importance of airway clearance
*Devices and techniques for airway clearance
*Cleaning and disinfection

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Presented by :
Michele Manion, PCD Foundation

Guest Speaker:
John Matthews, MBBS, MCRP, PhD
Chief Medical Officer
@ReCodeTx

Learn more about the importance of research, including the crucial role of patients. ReCode will also share important updates on the RCT1100 study.

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As Patient Experience Week draws to a close, we extend our deepest gratitude to the PCD Foundation and Bill Anton for their partnership and collaboration. Working closely with those who live with PCD inspires and propels our work forward.

Researchers and patients should not be disconnected. Our collaboration can bring about a future that, in Billy’s words, “would not be believable that it would happen this soon.” Ongoing advocacy from patient communities helps advance research, and this symbiosis makes for a promising future guided by collaborative and rigorous science.

The full video is now available on @ReCodeTx 's YouTube:
https://lnkd.in/gg8emDZc

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This Patient Experience Week, let's reflect on the critical need for tailored treatments in healthcare. In today's video excerpt, Bill Anton, PCD Patient and Chairman of the PCD Foundation, discusses the lack of specific therapies targeting Primary Ciliary Dyskinesia (PCD).

At @ReCodeTx , we aim to change this deficiency with RCT1100, our pioneering mRNA-based therapy targeting the genetic roots of PCD—specifically mutations in the DNAI1 gene.

Full video will be available soon!

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Patient Experience Week honors the profound daily impact healthcare professionals have on the patient experience. As this year's commemoration begins, we're proud to introduce you to Bill Anton, Chairman of the PCD Foundation and a patient advocate living with Primary Ciliary Dyskinesia (PCD). Earlier this month, we spent a couple days with Billy learning about the day-to-day management of his PCD, his current symptoms and treatments, and his future outlook.

At @ReCodeTx we are committed to transforming the treatment landscape for genetic diseases like PCD. Through our research, including our PCD-focused mRNA-based therapy, RCT1100, designed to restore ciliary function by targeting the disease's root cause.

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Everyday, Bill Anton, PCD Patient and Chairman of the PCD Foundation, asks himself, “What am I doing today to give myself the best chance at tomorrow?”

As Patient Experience Week continues, and every week at @ReCodeTx we’re focused on the unique challenges Primary Ciliary Dyskinesia (PCD) presents, including chronic respiratory infections and the constant need for vigilance in health management. Despite these challenges, patients like Billy and their families face each day with hope and determination.

We share in their optimism. Stay tuned for the full video.

#PatientExperienceWeek #PCDFoundation #PrimaryCiliaryDyskinesia

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The latest webinar in the series from ReCode Therapeutics, will provide you with information about a genetic testing program called ThinkPCD. You will learn about the genetics of PCD and how to participate if you are interested.

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Learn about an upcoming clinical trial of an mRNA therapy developed by ReCode Therapeutics that will target PCD-causing genetic defects in the DNAI1 gene.

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Learn more about the clinical trials process
Presented by Ramona Doyle, MD

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Acceptance speech from honoree, Micheal Knowles, MD

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PCD family shares their experience. Also hear from-
Paul E. Moore, MD, Professor of Pediatrics and Pharmacology, and Director, Pediatric Allergy, Immunology and Pulmonary Medicine, Monroe Carell Jr. Children's Hospital at Vanderbilt
and
Michael O'Connor, MD, Assistant Professor of Pediatrics, and Medical Director, PCD Foundation Registry
Monroe Carell Jr. Children's Hospital at Vanderbilt

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Reflecting back on 20 years of progress and look ahead to the future.

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PCD Foundation hosted a live webinar entitled:
Deciding to Take Part in Clinical Research: What Comes Next?,
presented by:
Kelli M Sullivan, MPH.
Clinical Research Coordinator
University of North Carolina, Chapel Hill
PCD research is moving full-speed ahead!

Watch us to learn more about what happens when you or loved one decide to participate in a clinical research study. Learn what it means and what your rights & responsibilities as a patient are. Get your questions ready. We're on the path of exciting research opportunities to improve our understanding of this complex disorder and help find a cure for PCD. We want you to be informed!
@pcdfoundation3246

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Learn more about what we have learned so far, what still needs to done and how you can participate in exciting research opportunities to improve our understanding of this complex disorder and help find a cure for PCD.

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Presented by William Hannah, MD and Benjamin Gaston, MD.

The presentation will focus on the paper, 'The global prevalence and ethnic heterogeneity of primary ciliary dyskinesia gene variants: a genetic database analysis'. Both doctors are authors on the paper and will discussing be research goals, study limitations, what their findings mean in the real world, and possible next steps for further research.

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The presentation will provide information on common mental health issues related to PCD among patients as well as caregivers, tips for building resilience in children and teens with PCD, wellness and protective factors, when to seek help, and resources and supports.

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Importance of Clinical Research Webinar
Presented by Dr. Michael O'Connor

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Join us Wednesday, December 16 at 7:30PM (CT) for a Virtual Event Supporting the PCD Foundation.

Register here: https://one.bidpal.net/cleartheway/welcome

#pcdfoundation #cleartheway4pcd #primaryciliarydyskinesia

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A side-by-side comparison of normal cilia vs. dyskinetic (PCD) cilia.

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