The Caregiver’s Journal with Lance A. Slatton & Denise M. Brown: Chapter 2 “The Path to Diagnosis”

The Caregiver’s Journal with Lance A. Slatton & Denise M. Brown: Chapter 2 “The Path to Diagnosis”


The Caregiver’s Journal hosted by Lance A. Slatton and Denise M. Brown.

The Caregiver’s Journal is the show where we are sharing the caregiving experiences, stories, and wisdom of family caregivers.

Chapter 2 – “The Path to Diagnosis”:

In this journal entry, we welcomed Jesus Loreto, Sharon Hall, and Effie Parks who shared their stories and experiences on “The Path to Diagnosis”.

Jesus Loreto:

Jesus is a Certified Caregiving Facilitator and member of the Patient Advocacy Council Guthy Jackson Charitable Foundation

Caregiver for his beautiful wife Maria Elena who was diagnosed with Neuromyelitis Optica NMOSD (NMO) for 16 years. Jesus had been running a caregiver’s support group for almost a decade and found it very rewarding to help others to navigate their diagnosis and manage their disease day to day.

Jesus believes that by telling your story you can save lives, you make people realize they are not alone. They have readjusted to their new normal, and love life. They live with NMO but NMO is not their life.

Sharon Hall:

During Sharon’s 18 years of caregiving, she has navigated the medical community, the social service community, and the support community. Her husband was diagnosed with frontotemporal degeneration, so she has added experience in young onset dementia.She was a care partner speaker at the Research Summit on Dementia Care and Services at the NIH in 2017. She has also presented at the 2017, 2018 and 2019 National Caregiver Conferences. Sharon has been a speaker in many webinars on dementia.

She facilitates a local support group and an online chat for care partners. She also has a podcast with a dementia expert to give families much needed information. Sharon also contributed to the “Fighting Alzheimer’s” insert in USA Today. Sharon is active in social media within the dementia community.

Effie Parks:

Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community following her son Ford’s diagnosis with CTNNB1 syndrome. Settling in Washington, she transformed her family’s journey into a crusade for advocacy, support, and empowerment for families navigating similar challenges. As the host of the “Once Upon a Gene” podcast, Effie has been recognized for several awards including WEGO Health and Podcast Magazine for her impactful storytelling and resource-sharing in the realm of rare genetic disorders.

Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders. Her skill in community engagement, developed through her advocacy, empowers her efforts in building a supportive network and raising awareness.

With a mission to leave the world better than she found it, Effie is dedicated to fostering a more informed and empathetic environment for those impacted by rare diseases. Her work embodies resilience and compassion, inspiring and uniting the rare disease community. Effie’s journey is not just about sharing stories, it’s about driving change and creating a lasting impact in the world of rare genetic conditions.

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