Rarely Familiar

04/10/2026

For anyone in need of mobility equipment, this is an amazing resource!

04/09/2026

Mark your calendars, This is a great event! I sure hope “Dunk a doc” makes a return!

04/09/2026

We’ll be there…join us!

MCD is joining the Minnesota Consortium for Citizens with Disabilities (MNCCD) and other disability-led and allied organizations for 2026 Disability Advocacy Day at the Capitol on Wednesday, April 29, 2026.

The event brings people with disabilities, allies, and supporters together to advocate for policy change and connect with others across the disability community.

This year’s event returns to the Minnesota State Capitol with the theme “Disability Justice: Safety in Community.” Before the rally, attendees can make posters, learn more about the MNCCD policy agenda, and connect with other advocates. The rally will take place in the Capitol Rotunda, followed by meetings with legislators throughout the day.

Learn more: https://www.disability.state.mn.us/2026/04/08/join-2026-disability-advocacy-day-at-the-capitol-on-april-29/

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!

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.

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

02/27/2026

https://www.instagram.com/reel/DVPHSHIEkar/?utm_source=ig_web_button_share_sheet&igsh=MzRlODBiNWFlZA==

02/26/2026

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

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...

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.