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Family Leadership & Advocacy Institute

Helping mothers of children with disabilities lead with confidence, at every age and stage.

Kids Rare Care™ empowers mothers to become confident advocacy leaders, strengthen their child's independence and support systems, and create capacity to pursue their own dreams.

Tina Vincent speaking at a podium
  • 26 yearsof advocacy, training and community leadership
  • 22 yearsfederal career, including Social Security Title XVI
  • 4 stagesearly childhood through adulthood
  • 2 voicesTina and Miss T, on stage together

Speaking and partnerships

  • Voices of Achieve
  • CaringBridge
  • Preemie Advocacy Network
  • National Caregivers Conference
  • Arkansas Home Visiting Network
  • SOPHE Arkansas
Who we serve

Support for mothers, and for the people who serve them.

01

Mothers

Mothers of children with disabilities or complex medical conditions, from early childhood through adulthood.

02

Organizations

Disability-serving organizations that want stronger family partnerships.

03

Professional audiences

Conferences, agencies and professionals who serve these families.

Independence looks different for every person

01

Early childhood

02

School years

03

Transition years

04

Adulthood

For many, independence includes lifelong support. We help mothers plan for what independence means for their child, at every stage.

What we do

Our three pillars

03

Community Impact & Resources

The Rare Reader™, books, educational resources, community partnerships and rare disease initiatives.

Explore resources →
The B3 Framework

Believe • Build • Become

01

Believe

Recognize possibilities and develop a vision for Mom and her child.

02

Build

Develop skills, meaningful choices, dependable support systems and practical plans appropriate to your child's age and needs.

03

Become

Become a confident advocacy leader who prepares for the future and creates capacity to pursue her own dreams.

For mothers

From Mom Manager to Mom Visionary™

A 50-day mentorship built on the B3 framework that helps a mother move from managing every responsibility to leading with confidence and a clear plan.

Start with the free Are You Ready? assessment. When you finish, you receive your free Mom Capacity Snapshot™.

The Mom Capacity Snapshot
For organizations

The Founding Partner Cohort

A 6-month mentorship cohort that builds mom capacity, leadership and a practical plan for greater independence, with shared progress reports for your organization.

What your organization gains

  • Mothers with greater confidence and leadership
  • Stronger family partnerships
  • A clear, practical plan for greater independence
  • Measurable progress and shared outcomes

“No mother should have to spend her life holding everything together while silently wondering what happens to her child when she is gone.”

Tina Vincent, Founder & CEO, Kids Rare Care™

Tina Vincent and her daughter, Miss T
Meet Tina and Miss T

Tina Vincent turns lived experience and decades of systems expertise into something families can actually use.

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.

Miss T, Tionna Jackson, 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 held four jobs across thirteen years, graduated from Project SEARCH at Arkansas Children's Hospital, and stood in the White House for the ABLE Act ceremony.

Miss T at work on the finishing team
At work, finishing team
Miss T on shift at Arkansas Children's Hospital
Project SEARCH
Miss T with her mentors
With her mentors
Tina and Miss T on a bench
Tina and Miss T
Resources

Take Kids Rare Care home with you.

The Rare Reader newsletter

The Rare Reader™

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™.

Subscribe →
Suddenly Brave Together

Suddenly Brave Together and the Kids Rare Care™ planners

Thirty letters from experienced caregiving mothers to the ones just starting, plus caregiver planners built to hold the medical, educational and daily information families are asked for over and over.

Get the book →
See the planners →

Resource Center

Educational resources, guides and tools for families and the professionals who support them, all in one place.

Visit the Resource Center →
Book a discovery call

Start with a 30-minute conversation.

Share where your family is today and what you need most. You'll leave with a clear next step, whether that's the mentorship, a workshop or a partnership for your organization.

  • 30 minutes on Google Meet
  • For mothers and for organizations
  • No cost, no pressure
Two ways to begin

Whether you carry this at home or lead a room full of people who do.

Mothers start with the free assessment. Organizations start with a partnership conversation.

Subscribe to The Rare Reader™ →

Take the free assessment