Voice of the RareGivers™
A 6 Part Workshop Series for the Alexander Community
The experiences of rare caregivers are largely hidden, especially in the Alexander Disease community.
You often might feel as if your story is overlooked or misunderstood. This is an opportunity to build community with those who can relate. ‘Voice of the Raregivers™’ will provide you with a space to explore with others what it truly means to be the caregiver of a child with Alexander Disease.
During a six-week facilitated group discussion participants will explore topics ranging from the diagnostic journey to caregiving, identity shifts and navigating the medical system and identity shifts related to their child’s diagnosis.
Each workshop will include live virtual group discussions that are then reflected by a skilled illustrator, Dr. Chelsey Hauge. Five graphics will be produced specific to participant’s experiences in parenting a child with a rare disease, particularly in the context of what it is like to experience stress, uncertainty, anxiety, and fear while navigating your child’s rare disease. These insights will bring a ‘voice’ to these important topics and support future families, medical professionals, and others in the rare disease community to better understand the experience of parenting a child with Alexander disease and to better meet the needs of families.
Workshop will run from October 26th-DeCEMBER 7th, 2022
*Skipping Thanksgiving Week
Meetings hosted via ZOOM on Wednesdays 10-11 am PST
Must be 18 years or older to join. This workshop is not limited by gender. You must be a caregiver of a loved one with Alexander Disease.
Dr. Chelsey Hauge Zavaleta Positive Parenting Coach, Ph.D. Education
Dr. Chelsey’s expertise lies in social emotional learning, educational equity, and building calm, cooperative family relationships. She has taught and researched at The University of British Columbia, Stanford University, and Mills College.
Dr. Chelsey’s sensitivity to relationship dynamics and building cultures of empathy enable her to work with families striving to become the kind of parents they were meant to be. A mother to three children, she brings both deep professional expertise and compassion from her own parenting journey to bear in her work with families. She also has a passion for graphic design and uses her talents to visually represent her work.
ANGEL AID is deeply grateful to IONIS Pharmaceuticals for sponsoring this workshop
