As we head into 2024, we have compiled a list of events we would like to host in the New Year. We hope to make this a mix of both community-building events as well as informational events that help us understand the research that is going on in the sphere of PDE. We very much want and welcome feedback on these topics or additional topics you would like to see covered. If you know of anyone who would be a valuable speaker, please let us know. This list of speakers is of yet unconfirmed, so we remain flexible as we move forward.
January 2024: Welcoming the CurePDE Community Webinar
- We are creating a sense of community among PDE families.
- Welcome different families who want to join our community and do a round of introductions to foster connection.
February 2024: Decoding PDE Scientific Webinar
- We will cover the background and genetics of PDE.
- Understanding research on the current management of PDE.
March 2024: Gathering Feedback and Ideas from the Community
- Fun and engaging session to hear feedback on topic and community ideas from families and community members.
April 2024: Genomic advances in PDE
- Exploring personalized treatment plans for PDE and how genetic differences shape outcomes.
May 2024: Art and Expression Show and Tell: Celebrating the Community
- The goal is to allow members and families to showcase the talents within the PDE community.
- This is meant to be in the spirit of a “Talent Show” and to foster positive messages about the unique aspects of each community member.
- Encourage creative expression and celebrating the uniqueness of kids and adults with PDE.
June 2024: Clinical Neuropsychology and PDE Scientific Webinar
- Gather insights into epilepsy and clinical neurophysiology in a broader sense.
July 2024: PDE Stories of Strength Community Webinar
- This is meant to support each other as members share stories of resilience and to serve as a place of mutual support.
- If possible, we can also do a community support Q&A.
- Members can suggest good resources they have used and resourced.
August 2024: Metabolic Insights Scientific Webinar
- Understand genetics of neurometabolic disease.
- Understand the advances in creative deficiency syndromes and related disorders.
September 2024: Virtual PDE Family Picnic
- A virtual gathering to play games and connect over some fun.
October 2024: Beyond Genetics Scientific Webinar
- Explore the broader aspects of PDE beyond genetic contributions.
November 2024: Gratitude and Reflections- PDE Community Thankfulness
- Reflect on our collective journey and express gratitude.
- Think about what we need moving in the future.
December 2024: Unraveling the Molecular Basis of PDE
- Understanding the molecular basis of inherited disorders.
- Looking into new treatments for brain and liver-related disorders.
