PCD Awareness Month

October is PCD Awareness Month

Each year in October we come together for PCD Awareness Month – a dedicated time for PCD families, advocates and supporters of the PCD Foundation to raise awareness and funds for primary ciliary dyskinesia (PCD). What started as a one-day national walk for the PCD Foundation in the early 2000’s, has grown into an international awareness month for PCD.

It is a time for all of us to share in the efforts of the PCD Foundation, fellow PCD patient organizations across the world, and the PCD medical and research community – all working to improve diagnosis, access to comprehensive care, treatment, research and ultimately a cure.

Help ‘Clear the Way for PCD Awareness Month’

‘Clear the Way for PCD Awareness Month’ is a $10,000 fundraising campaign to support the PCD Foundation. The campaign takes place throughout the month of October, and will ensure the PCD Foundation advances its mission of expanding programs and support initiatives focused on finding a cure for PCD. 

We invite you to join us in supporting the PCD community this October by donating, by registering to host a fundraising page or by organizing an event of your own. To support your efforts, we have peer-to-peer fundraising software available for your use, along with fundraising resources to help you get started. 

The PCD Foundation is a patient advocacy organization reliant on philanthropy to expand program and support initiatives focused on finding a cure for PCD, and we couldn’t do it without you! We are grateful to our community of fundraisers who share a passion for improving the lives of PCD patients and families.

There are many ways to give and lend your support during this special month. Below is a list of ways you can participate in PCD Awareness Month.

  • Follow the PCD Foundation’s social media accounts for daily facts about PCD. You can follow along on our Instagram  and Facebook pages and share on your own to help spread awareness!
  • Tune in to an educational webinar featuring Michael O’Connor, MD. Dr O’Connor is the PCD Foundation Registry (PCDF)  Director and Assistant Professor of Pediatrics at Monroe Carell Jr. Children’s Hospital at Vanderbilt. More details to follow via email!
  • Share your personal story.
  • We encourage you to wear blue throughout the month to show your support during PCD Awareness Month. Capture and share the moment! Don’t forget to @pcdfoundation and include the hashtag #cleartheway4pcd. We can’t wait to see you in blue!

Why is this important?

PCD is challenging to diagnose, leading to both missed and misdiagnosis. It is a progressive and invisible disease.

 

Access to high-quality diagnostic and treatment services for individuals with PCD is a primary goal of the PCD Foundation. Ongoing research has helped us understand the complex genetic picture of PCD and related disorders, expanding our view of PCD and improving options for early, accurate diagnosis. Now is the time to translate what we’ve learned into effective therapies, and ultimately a cure for PCD.

The PCD Foundation ‘Path to Clinical Trials’ will provide resources and support to get to the cure for PCD by integrating two critical components of successful rare disease research – the PCDF Clinical and Research Centers Network (CRCN) and the PCDF Registry, launched at five pilot sites this year. With a clinical registry, we’ll have data to support future clinical trials. There is strength in numbers! It is empowering for patients to participate in clinical trials, and this valuable information can help provide insights and guide future treatments.

Learn more about PCDF Clinical and Research Centers Network and PCDF Registry.