DadVocate | RareDiseaseDad.com
Adam Johnson is a rare disease patient & self-proclaimed DadVocate (a dad first & advocate second). He is a lifelong educator who lost his career after receiving a life-altering rare disease diagnosis in 2019. Feeling alone, afraid, & helpless, he sought connection with others & began advocating through social media, a website, a blog, and most recently, a podcast series called Parents As Rare, part of MitoActionâs Energy In Action podcast. His overall motivation stems from the goal to own his story while supporting others along the way, including his children, family, the rare disease community & other parents facing similar challenges.
Effie Parks
Podcast Host | Rare Mom | Nuclear Advocate
Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings. After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks. When she learned that Ford had been born with an extremely rare genetic condition â CTNNB1 syndrome â she dove into the world of advocacy. Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease. Since the launch of the podcast, Once Upon A Gene was awarded âBest In Show Podcastâ by WEGO Health. Podcast Magazine recognized Effie as one of the 40 Under 40 Podcasters and she has been nominated for two Champion of Hope awards from Global Genes. Her mission is to learn, lift voices of the community, connect people to resources and to leave this world better than she found it for others in the rare disease world
Kristy Dickinson
Founder and Managing Director | Chronically Simple
Kristy Dickinson is a mom to three kids, a wife to a first responder and an entrepreneur. After
being diagnosed with a complex rare disease, Kristy struggled to keep on top of all the
administrative burden that accompanies living with a chronic illness or disability. Managing 11
different specialists across 3 hospital jurisdictions and over 15 daily medications was
overwhelming. Kristy went looking for a digital solution to help her manage all the moving pieces
of her health and she could not find one that did everything. So, she decided to build what she
needed.
Chronically Simple alleviates the administrative burden that accompanies life with a chronic
illness, allowing patients and caregivers to manage the complexities of living with a chronic
illness or disability, without additional, unneeded stress. The app allows users to take control of
the administrative work by linking prescriptions and test results to physicians, to appointments,
to expenses, and care team members, giving users a truly holistic view of their healthcare. What
Kristy is most proud of is that every feature within the app has been built based on a patient or
caregiverâs pain point or journey. Chronically Simple is available for download in the App Store,
Google Play or at www.chronicallysimple.com.