Kids Rare Care™ equips families with practical strategies for greater independence, and equips organizations to strengthen advocacy, leadership, inclusion and family engagement.
We work with the mother carrying it at home and with the organization trying to serve her well. The work is the same work from two directions.
For professional mothers raising children and young adults with disabilities, rare diseases or complex medical needs, at any stage. The earlier you start, the more foundation you get to build.
For corporations, healthcare systems, schools, disability and rare disease organizations, associations and faith communities.
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Thirty years ago she was told her daughter would not survive. Today Miss T lives in her own home with 24-hour support, has held four jobs over thirteen years, and shares the keynote stage with her mother.
Between those two points sits a 22-year federal career, three years as a Social Security Title XVI Claims Specialist interviewing families at the exact moment their child turned 18, a degree in Social Psychology, and 26 years of advocacy, training and community leadership.
Her daughter's journey is part of her credibility. It is not the whole of her professional identity.
Everything built under Kids Rare Care™ has a home. Some divisions are serving families today. Others are being built deliberately, in order, as demand grows.
Assessment, workshop, mentorship and private advisory for mothers.
Family engagement, disability awareness, advocacy and caregiver wellness.
Keynotes, conference sessions, corporate programs, panels and interviews.
Mentorship, faith community inclusion, volunteer education, partnerships.
A growing, verified index of services, benefits and organizations.
Two short parts, about five minutes. Honest questions about what you carry and what your young adult could carry.
Start here →Your Mom Capacity Snapshot™ comes back scored on your own answers, with the one next step Tina recommends.
A real conversation about where you are, with no pressure and no pitch unless you ask for one.
The workshop, the guided cohort, or private advisory. You choose the depth, and you can stop at any step.
See programs →Alone we can do so little; together we can do so much.
Helen KellerMiss T is a self-determined professional, a speaker and a community advocate. She lives with Trisomy 8 Mosaicism, a rare genetic condition, along with intellectual disability and barriers to communication, and she presents alongside her mother using her augmentative and alternative communication device.
She has lived in her own home with 24-hour support for five years. She has held four jobs across thirteen years, graduated from Project SEARCH at Arkansas Children's Hospital, earned her food service certification and CPR, and stood in the White House for the ABLE Act ceremony.
“Somebody gotta do it, and it's going to be you.”
Miss T, on the caregiver's role
Tina speaks to corporate audiences, women's leadership conferences, healthcare and public health systems, caregiver and rare disease conferences, educators and faith communities.
Leadership is not simply having authority. It is having the courage to use your voice, navigate complexity, build bridges, and move people toward meaningful change.
Staying focused and deciding well when the path is complicated and the stakes are high.
What your workforce is carrying that never appears on a status report.
Advocacy is collaboration, not confrontation.
The institute's educational newsletter for families navigating rare disease and medical complexity. Twice a month, in text and audio, now including the Rare Reader Resource Library™.
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Thirty letters from experienced caregiving mothers to the ones just starting. Tina and Miss T's story is letter number two of the thirty chosen.
Get the book →
Two planners created with the Care Partners Project, built to hold the medical, educational and daily information families are asked for over and over.
See the planners →Families start with the assessment. Organizations start with a conversation. Both take about five minutes to set in motion.
