Alena & Jillian Talk About Her Journey as a Rare Disease Mama

Jillian is a partner to her husband Donald, mother to her two rare warriors, Roman (5) and Stella (4), host of the podcast Confessions of a Rare Disease Mama, and rare disease advocate. She is very passionate about propelling research forward for all types of diseases (most especially rare diseases) and has been able to fundraise over $130,000 for research for her children’s genetic condition (ASMD) over the past two years. In addition to her roles as a podcast host and full time caregiver/medical mama, she is also a member of the Research Participant Advisory Committee at Cincinnati Childrens, as well as the Genomic Information Commons Participant Advisory Panel and sits on the Family Support and Assistance Committee for the National Niemann Pick Disease Foundation. Her spiritual awakening began shortly after her children were diagnosed with their rare and life limiting condition and she has been deepening her spirituality since then. She feels her soul’s purpose is to spread their journey far and wide and let others in similar circumstances know they are not alone. Despite the intense obstacles she has been given with her children, she is beyond grateful for this life with them and strives to find joy amongst the challenges.


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