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Young Adult Resources
- Avery Roberts & Kierra Sunris
Young Adult Community Members
Being young adults with a rare disease ourselves, we think about our future a lot.
We want to help the CMD community navigate and interpret these often tricky concepts with useful tips and tricks for transitioning into this new and sometimes intimidating chapter of our lives.
These resources can give insight on how to navigate the healthcare system as a disabled individual.
Transitioning to Adulthood
Global Genes Financial Advocacy In RARE: Young Adult Resource Guide
Transitioning from Pediatric to Adult Care with a Rare Disease
Thriving while attending school with a disability can be tricky. Below are resources that can help you have a successful educational career and get through the long journey while still thriving.
IEPs and 504s: Getting the most from Public School and Support
New Mobility's Wheels on Campus: The First College Guide for Wheelchair Users
Cure CMD Webinar: Young Adult Educational Transitions
"College Search", A Cure CMD Blog by Sarah Foye
Liam: A Rare College Experience
"Academic Advocacy," A Cure CMD Blog by Kierra Sunris
"011 - Back to School" Two Rare Mama Bears, a Cure CMD Podcast
"004 - [Angela] Young Adults & Transitioning to College" Two Rare Mama Bears, a Cure CMD Podcast
Cerebral Palsy Special Education | Options for Your Child
Accessible College Partnership with the Reeve Foundation
Navigating the Transition to College with Paralysis
A Wheelchair User's Guide to Preparing for College and How to Secure Housing and Manage PCA Services at College
When Students with Health Conditions Transition to College
How Can Students with Health Conditions Successfully Navigate the College Transition?
Perkins School for the Blind-College Readiness Resource Center
Transitioning between phases of life is hard, especially when it comes to growing up. These are resources that can guide you as you transition your way through life.
Got Transition®
Helping Young People with Disabilities Successfully Transition to Adulthood
How to Help Students with Disabilities Transition to Adult Life
Life Stages & Transitions
Transition Planning
How to handle finance as an affected individual (disability benefits, etc.)
Social Security Disability Tips
Benefits and Financial Help in the UK
Benefits for People with Disabilities
How To Get A Loan If You Are Receiving Disability Benefits
The Fully Accessible Guide To Paying For College For Students With Disabilities
Overview of Medicaid Waiver Programs (for every state)
USAGov's Official Guide to Disability Services
Here are some resources about modifications you can make to your home to suit your needs and wants.
Home Modifications - Americans for Independent Living
A Guide to Homeownership Programs for People with Disabilities
Disability Housing Programs and Resources for Adults With Special Needs
Assisted Living Options for Young Adults With Disabilities
Housing Resources for People With Disabilities
Home Improvements for people with Disabilities
Administration for Community Living's Directory for Centers for Independent Living
Transportation & disability is a tricky concept. Here are a variety of topics that can help you understand driving and getting around with CMD.
Adaptive Driving Alliance
Controls: *NOTE: These links are for advanced controls. The companies that provide the adapted vehicles help you with mechanical hand controls
- EMC
- Paravan
Wheelchair Lockdown Systems:
- EZ Lock
- Q'Straint
Adapted Vehicles: (*NOTE: Every automaker has a mobility section that can provide rebates for adapted equipment. We only provided the link for the automakers that produce vehicles that can be converted for wheelchair accessibility)
- Braunability, VMI, Rollx, Freedom Motors, ATC, AMS, Toyota Mobility, Honda Mobility, Chrysler Mobility, Ford Accessibility, General Motors
Mobility Works
Adaptive Equipment Funding | Ford Accessibility Program
Disability & Driving in the UK
Transport Support Services for Disabled People in the UK
"009 - Traveling with a Disability" Two Rare Mama Bears, a Cure CMD Podcast
"006 - Adaptive Driving and Adaptive Vehicles - Simon Cantos" Two Rare Mama Bears, a Cure CMD Podcast
Community is an amazing thing. The definition of the word, community: a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals. Below are great organizations that have organized supportive people and gatherings.
Our Odyssey's Virtual Meet-Ups
Young Adult Representatives of RDLA (YARR)
Cure CMD Peer-to-Peer Match & Mentorship
As someone with CMD, it can be hard to thrive without the help of others. Here is how to live your truth as your own person.
Taking Control: Gaining Independence as a Young Adult with a Rare Disease
Careers in the UK
Disability Equipment in the UK
Directory of Disability Service Offices
State Vocational Rehabilitation Agencies
CMD Community Member's TikTok Accumulates Over 40,000 Followers
Three Days of Teaching Future Doctors
How I Made the Official Cure CMD App
Cure CMD Community Member Makes Her School Research Project Relate to Her Personally
Community Member, Jonathan Lengel, in the Netflix movie: 13: The Musical
Quest Magazine Features Community Member, Justin Moy, and His Journey Pursuing a Career in STEM
'Ordinary Joe' Actor with MD Brings Life to TV Character With Disability
Annie Live!: My First-Hand Experience in a Television Production
Netflix's 'The Healing Powers of Dude' Sophie Kim and abilityE
"031 - Wheelchair Rapunzel...Inclusion, self-love & body positivity with Instagram Blogger, Alex Dacy" Two Rare Mama Bears, a Cure CMD Podcast









Have a great resource you'd like to share? Get in touch!
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