Monthly APBD Patient Chat Group

Since 2014, our monthly APBD Patient Chats have helped individuals affected by APBD to connect with each other. Our goal is to provide a supportive, safe space for our community members . These sessions, led by Harriet Saxe, let patients discuss symptoms, share experiences, and explore coping strategies.

Join us on the fourth Wednesday of each month. 
Every other month, we alternate between 9 AM PT / Noon ET and 4 PM PT / 7 PM ET to accommodate participants from 15 countries. 
To join or for more information, email Harriet at info@apbdrf.org

Throughout the year, we feature health experts. The sessions are recorded and translated into multiple languages, including German, French, Brazilian Portuguese, and Hebrew. Click on the links below to view past recordings.

• APBD Patient Chat: Understanding Biosamples (August 27, 2025)
  Guest Speaker: Lindsay Gill, Ph.D., APBDRF Research Manager
  

• APBD Patient Chat: The GHF Study (December 18, 2024)
  Guest Speaker: Rebecca Reef, MS, CGC, APBDRF Scientific Coordinator
  

• APBD Patient Chat: Understanding Biomarkers (November 20, 2024)
  Guest Speaker: Rebecca Reef, MS, CGC, APBDRF Scientific Coordinator
  

• Speech and Swallowing Disorders in APBD (April 24, 2024)
  Guest Speaker: Harrison Jones, PhD (Duke University)
  

• APBD Genetics: Genes, Enzymes, and Research, Oh my! (December 13, 2023)
  Guest Speaker: Noelle Lynch, GS Intern (Columbia University)
  

• Fall Risk, Recovery Techniques, and Prevention Considerations (November 15, 2023)
  Guest Speaker: Tracy Boggs, PT, MPT, NCS (Duke University)
  

• How Physiotherapy Can Help Mitigate APBD Symptoms (June 28, 2023)
  Guest Speaker: Kat Supa, BScPT (Lifemark Heritage Hill)
  

• A Doctor Detective Discusses Rare and Undiagnosed Diseases (Feb. 23, 2022)
  Guest Speaker: Dr. Clyde Partin (Emory University)
  

• Documenting Your APBD Experience in a Natural History Study (Apr. 27, 2022)
  Guest Speaker: Rebecca Koch, PhD (Duke University)
  

• APBD and Bladder Issues Q&A (Sept. 22, 2021)
  Guest Speaker: Dr. Melissa Reigle (in private practice, OH)
  

• Nutrition and APBD (May 20, 2021)
  Guest Speaker: Yael Kuperman, RD, PhD (Weizmann Institute of Science, Israel)
  

• Engaging a Zoom-based Personal Trainer (April 28, 2021)
  Guest Speaker: Bob Nelson, MS, CPT, LMT
  

• Managing Bladder Dysfunction (Feb. 24, 2021)
  Guest Speakers: Dr. Paulo Victor Sgobbi de Souza and Dr. Wladimir Bocca Vieira de Rezende Pinto (Federal University of São Paulo, Brazil)
  

• The Genetics Behind APBD (Nov. 18, 2020)
  Guest Speaker: Alexandra Tinfow (Columbia University)
  

• Foot Drop and Orthotics (Oct. 28, 2020)
  Guest Speakers: Cathy Morris (physical therapist) and Kris Desjardins (certified prosthetist and orthotist)
  
  We’re also working on translating these presentations into French, German, Hebrew, and Portuguese to reach our international community members. Stay tuned!