We had a vision in 2018, to create a place for those passionate about advocating for health care policy and reform to learn “the ropes” of advocacy. It can be frustrating to have a passion to make change and not know how to do it, or worse, feel like a lone wolf making little progress. We teamed up and founded iCARE (Innovative Caregiving Advocates with Real Experience).
MaryAnne Sterling was a caregiver and healthcare advocate for her parents for 20+ years, with 3-out-of-4 parents and in-laws diagnosed with dementia. She is a speaker, writer, and educator on the challenges of family caregiving, the promise of person-centered care and technology, with a special focus on Alzheimer’s disease.
She works tirelessly to advocate for other families impacted by dementia, and you will often find her on Capitol Hill or speaking at healthcare events around the country. She is a Patient Research Partner and Ambassador for the Patient Centered Outcomes Research Institute (PCORI), bringing the voices of patients and family caregivers to medical research. She also serves on the Global Patient and Family Advisory Board for The Beryl Institute, in addition to being selected as a Stanford Medicine X ePatient Scholar. MaryAnne is EVP of Caregiver Experience at Livpact, building technology to make caregiving easier.
Sharon Hall is a care partner to her husband, who has frontotemporal degeneration (FTD), and a former care partner for her parents. She is an active advocate for FTD, serving as a support group facilitator and educator for The Association for Frontotemporal Degeneration.
She conducts an FTD Zoom chat for care partners twice-a-week, and hosts a monthly podcast called “Talking FTD”, on talkingftd4you.podbean.com. Sharon has provided thought leadership on Medicare webinars, represented FTD care partners at the NIH Research Summit on Dementia Care and Services, and remains active in Georgia’s Alzheimer’s and Related Dementias State Plan, helping to shape and implement dementia-friendly policy. Her signature purple hair, purple glasses, purple nails and even a purple headset cement her as a world class dementia advocate. Sharon’s mantra: unpaid family caregivers need to know how to make their voices heard. “No matter how little or how much time you have to devote to advocacy, there is a place for everyone to make a difference.”