Rarely Familiar

Rarely Familiar Gritty adventures in raising kids with disability and rare medical complexity.

04/03/2026

Haley recently shared her work incorporating the voice of Lived Experience into Medical Research at Gillette Children's Cerebral Palsy Institute Summit a few weeks ago. She was overwhelmed by the positive response and the thread of Lived Experience throughout the day and in presentations by many of the other speakers. Gillette is clearly living their mission of working in collaboration with patients and families!

Register for FREE today for the Handi Abilities Conference. Friday May 1 and Saturday May 2
03/24/2026

Register for FREE today for the Handi Abilities Conference. Friday May 1 and Saturday May 2

Online registration for Handi Abilities Showcase.

03/22/2026

🎤NEW PODCAST EPISODE ALERT🎤

Meet Anne St. Martin, mom to Leo, a rare disease warrior who can’t break down glycogen, but can sure break down stereotypes! Anne’s journey from chaos to rare disease advocacy and starting her own foundation for Pompe Warriors is remarkable. Find the full 1/2 hour episode on rarelyfamiliar.com or on Apple, Spotify or YouTube.

Families raising kids with medical complexity are often carrying not just the emotional and medical realities, but an en...
03/18/2026

Families raising kids with medical complexity are often carrying not just the emotional and medical realities, but an enormous financial burden of questions no one really prepares you for:

*Can I afford to stay home with my child?
*Do I pursue PCA support, paid parent caregiving, or try to hold onto my career?
*What happens when my child turns 18 and won’t be able to work in the traditional sense?
*What happens when I’m gone?
*Should they be included on my life insurance policy?
*How can grandparents or extended family help in a meaningful way?
*What exactly is a Special Needs Trust? An ABLE account?

These are huge questions, and too often families are left to navigate them alone while already managing everything else.

I’m grateful to Gillette Children's for creating space for these conversations and helping bring a little more clarity to a reality so many families are living every day.

Caring for a child with complex and lifelong needs comes with many questions, especially when it comes to finances and long-term planning. This session is designed for Gillette families caring for children with lifelong conditions, who want to better understand financial resources and planning options. Sign up to join us in-person at our St. Paul Campus, or online on Tuesday, April 28th from 12pm-1pm : https://gillette.mn/4doRKWD

LInks are in the comments for the example list of organizations legislative agenda priorities.
02/26/2026

LInks are in the comments for the example list of organizations legislative agenda priorities.

Dr. Tori Bahr, Andrea Lawson and Haley Brunelle had a conversation last week for a  PACER Center series entitled 'Thrivi...
02/21/2026

Dr. Tori Bahr, Andrea Lawson and Haley Brunelle had a conversation last week for a PACER Center series entitled 'Thriving Together' They offered both Parent and Provider perspective on Navigating the Health Care system. Link below to the 90 min recording.

Whether you started getting medical support at your child's birth or after a later diagnosis, health care systems can feel unfamiliar, complicated, and overw...

We will definitely be attending this informational session!
02/21/2026

We will definitely be attending this informational session!

The Minnesota Consortium for Citizens with Disabilities (MNCCD) invites you to our 2026 Session Start-Up event. During this event we will share our 2026 policy agenda, hear from invited speakers, discuss what is to come to this session, and more.

The event is Wednesday, February 25 from 10-11am on Zoom. To receive the link for the meeting, please register here: https://us06web.zoom.us/meeting/register/N-HK_6E2SQW7A67XoTi3Bg. After registering, you will receive a confirmation email containing information about joining the meeting.

We are excited for to the 2026 Legislative Session.

Now that the 2026 Minnesota Legislative session has officially started, here's how to stay on top of  that are particula...
02/21/2026

Now that the 2026 Minnesota Legislative session has officially started, here's how to stay on top of that are particularly relevant for people with disabilities.

Recap: 2025 Session Outcomes
In 2025, Minnesota lawmakers worked in a tight budget environment shaped by the February forecast. That pressure affected disability services, including waivers through the Minnesota Department of Human Services.

At the same time, federal Medicaid changes created new uncertainty for people who rely on Medical Assistance. Many of the changes do not take effect until late 2026, but understanding what is coming can help people plan and stay informed.

Even with those constraints, lawmakers passed several disability-related provisions find the 2025 recap and 2026 priorities here!

Follow disability-related policy during Minnesota’s 2026 legislative session. Our new blog post recaps key provisions that became law in 2025 and previews what to watch in 2026…

Thank you HopeKids for the Fairytale Ball at the Green Acres Event Center.Julian had a ball and was mesmerized by all of...
02/18/2026

Thank you HopeKids for the Fairytale Ball at the Green Acres Event Center.

Julian had a ball and was mesmerized by all of the Disney Princess characters with his favorite probably being Cinderella!

My mantra for the year 2026  is "Better Together" and it is true no matter what I seem to be doing or referencing. I loo...
02/12/2026

My mantra for the year 2026 is "Better Together" and it is true no matter what I seem to be doing or referencing. I look forward to presenting with these 2 amazing humans tonight: Andrea Lawson and Dr. Tori Bahr. I am so fortunate to have so many wise women navigating this world alongside me and working hard to create change in whatever ways we can. Additionally I have so much gratitude for amazing organizations like PACER Center helping to educate our community. We cannot, and should not, try to navigate any of this alone. -HB

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Minneapolis, MN
55417

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