When you or a loved one has FA, you may experience many types of loss and grief even while they are alive. That sense of loss can come with all kinds of feelings! In this 90-minute session you’ll learn about the concept of anticipatory grief. We’ll discuss what it is and how it may show up for you, explore some supportive strategies to help you cope, and we’ll share some useful resources. You’ll leave with a better understanding of grief before death, and the comfort of knowing that you’re not alone.
Event Details: This event will be hosted from 10:00-11:30 a.m. Pacific Time (MST +1, CST +2, EST +3 hours)
Translation: If you would like to request an interpreter for this session, please register at least one week prior to the event date. We will do our best to fulfill your request. A FARF staff member will email you prior to the event if we are unable to fulfill your request.
Allison Breininger has been caregiver to her husband, Sean, since 2011, when he was diagnosed with Fanconi Anemia at the age of 31. Since then, Allison has been by Sean’s side through a bone marrow transplant, seven different types of cancer, and everything in between. She advocates for caregivers by writing, consulting, training, and speaking honestly and openly about the challenges and realities of the role at her site http://www.thenegativespace.life.
Rachel Altmann has been active in the Fanconi anemia community for many years, as an FA parent, a member of the FARF Board of Directors, a contributor to FARF newsletters, and a fundraiser. She has worked in the education sector as an environmental educator at the Hawai’i Nature Center, as an Early Childhood Program Specialist at Multnomah County Library in Portland, Ore, and now as the library’s Youth Learning Supervisor. Her daughter, Nina, died of complications from Fanconi anemia in 2006 at age three and a half. Rachel continues to honor Nina’s legacy by working to advance FA research and support other families who face FA.