Support for Spouses and Partners | Care Partners

Care Partners have an essential role in the lives of their loved ones with Ataxia. Whether you are a parent, spouse, or other care partner, this series is for you! It will provide information on a variety of caregiving topics, such as daily care, care planning, self-care, and other specialized subjects. The goal of the Care Partners series is to provide guidance, strategies, and resources for those who provide care.
In this session, you'll gain insights from a panel of caregivers who share their stories, challenges, and strategies for managing the complexities of rare disease care. Discover a supportive community, learn practical tips, and find strength in shared experiences, all aimed at enhancing your caregiving journey.
Ataxia is a rare neurological disease that can have a wide array of genetic origins. For more information on Ataxia, please visit our website: www.ataxia.org
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About the Speakers-
Moderator:
Dana Mauro is a curious, knowledgeable wife of someone with 2 rare diseases: Ataxia and Mitochondrial disease. Her mission is to share reputable Ataxia information. In 2014 she launched a video series on UA-cam, Twitter and Facebook called ‘Did You Know Ataxia facts’ that reached 17 countries with 300 videos to date. She authored 4 PSA’s about Ataxia for NAF. She is the Support Group Leader for the NAF Spouses and Partners Support Group.
Panelist 1:
Sylvia Wadsworth is a retired high school teacher and administrator. Her husband Bill was diagnosed with SCA3 in 2013, and she was his primary caregiver until his recent death in 2023. Both Sylvia and Bill have been active members of the John Hopkins Ataxia Support Group advocating for Ataxia research funding both on a local and national level.
Panelist 2:
Dale Morgan married his wife Connie in August 1972. Ten years later, Connie was diagnosed with OPCA unknown type. They have 2 children, 4 grandchildren and 2 great-grandchildren. Dale was in the army as a physical and occupational therapy assistant. Now he is retired from the Ohio Department of Job & Family Services and currently working as a part-time bus driver for Quadco Rehabilitation Center.
Panelist 3:
Marian Hooson is a doctor in occupational therapy specializing in working with individuals who have sustained traumatic brain and other catastrophic injuries. Her partner, Carol, was diagnosed with late-onset Friedreich's Ataxia in 2007. Carol had to retire from her post working as a specialist doctor in occupational therapy in wheelchair prescription. She remains as active as practicable and is currently a member of the board of Trustees as well as a recognized ambassador for Ataxia UK.

[@kristinataylorthriftingupn7127]

Hi. My husband has ataxia. Cerebellar Ataxia as a result to bacterial meningitis after a brain tumour resection in 2016. It has been degenerative and he is basically bed ridden as of October 2023.
Thanks for the information ❤