Alpha-1 Canada’s Parent Representative provides support and advocacy for parents in the Alpha-1 Canada community. The Parent Representative may:
- Provide telephone and/or email support to other parents;
- Provide guidance on Alpha-1 Antitrypsin Deficiency resources;
- Liaise with other parents to keep them informed of activities and events in the Alpha-1 community;
- Facilitate social interaction among families in the Alpha-1 community.
Alpha-1 Canada’s Parent Representative is Ms. Cristin O’Sullivan. Cristin has been a volunteer with Alpha-1 Canada for many years. Cristin’s journey with Alpha-1 includes her son Declan, who she was a partial liver donor for when Declan was only 3 years old. Together Cristin and Declan have been staunch advocates for this rare disease, volunteering time to participate in awareness activities, public speaking at Patient Education Days and participating in the Canadian Transplant Games. Cristin can be reached at firstname.lastname@example.org
Dear Alpha-1 Family,
Declan and I have endured a bumpy road, fear of the unknown, hospital visits, sick leave, auto and air ambulance, transplant, PTSD, depression, a trauma-related disorder, and a lifelong dependency on medicines. Support gets us through the rough turbulence. When friends, family, co-workers and doctors can’t console, reach out to the empathic ears of the Alpha-1 community.
All the best, Cristin