- Who We Are
- Understanding FSHD
- Get Involved
Lighting the Way to a Cure
Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you wondered about participating in a trial? Are you involved in a trial? Come join us to discuss the requirements and how you can prepare for opportunities that may present themselves. If you are already in a trial, let’s talk about what is happening and how it’s going.
Please feel free to bring friends and family to support this discussion.
Our speakers will include:
Leo H. Wang M.D., Ph.D., is a board-certified neuromuscular physician at the University of Washington where he is an Associate Professor of Neurology. He is a researcher at the NIH-funded Seattle Wellstone Specialized Muscular Dystrophy Research Center. Dr. Wang is actively engaged in the latest research to improve the treatment of FSHD and how to measure treatment responses in a clinical trial. He has worked on natural history studies with the Wellstone projects and Resolve and is working on other projects that also include treatment trials that he will be happy to discuss.
Aliya Shabbir is a pre-med student and research coordinator for FSHD and other trials at UW. She will discuss what she does behind the scenes to prepare for visits and what is typically required when you participate.
Chris Haven, FSHD advocate and patient. Chris will talk about her experience participating in trials and the prep needed and the importance of keeping a symptom journal as the progression of the disease takes place.
**Note on ADA access: this home has easy access using universal access design. However, the bathrooms are not ADA specific. Lowe’s is 5 minutes away for ADA facility use.