Question 1

Healthcare System

Accepted Answer

These resources can give insight on how to navigate the healthcare system as a disabled individual.

• Transitioning to Adulthood(https://www.ultrarareadvocacy.com/transitioning-to-adulthood/)
 • Global Genes Financial Advocacy In RARE: Young Adult Resource Guide(https://globalgenes.happyfox.com/kb/article/270-financial-advocacy-in-rare-navigating-the-u-s-health-system-for-young-adults/?eType=EmailBlastContent&eId=b2ba7b80-46da-4498-add8-3871fb888957)
 • Transitioning from Pediatric to Adult Care with a Rare Disease(https://raredisease.net/clinical/transitioning-to-adult-care)

Question 2

Education

Accepted Answer

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(https://www.youtube.com/watch?v=wwwmKI0GGNQ)
 • New Mobility's Wheels on Campus: The First College Guide for Wheelchair Users(https://newmobility.com/college-guide-for-wheelchair-users/)
 • Cure CMD Webinar: Young Adult Educational Transitions(https://www.youtube.com/watch?v=NtRnG6RQSyQ)
 • "College Search", A Cure CMD Blog by S(https://www.curecmd.org/post/college-search)arah Foye(https://www.curecmd.org/post/college-search)
 • Liam: A Rare College Experience(https://www.youtube.com/watch?v=cpjneM9HVVA)
 • "Academic Advocacy," A Cure CMD Blog by K(https://www.curecmd.org/post/academic-advocacy)ierra Sunris(https://www.curecmd.org/post/academic-advocacy)
 • "011 - Back to School" Two Rare Mama Bears, a Cure CMD Podcast(https://open.spotify.com/episode/0dcOHuL22SoGUqbCbWF7Vo?si=VeL7IekiQDeapZIwxpIGRA&dl_branch=1&nd=1)
 • "004 - [Angela] Young Adults & Transitioning to College" Two Rare Mama Bears, a Cure CMD Podcast(https://open.spotify.com/episode/1EJAIBK95pcHp7VrRzVjXI?si=67bee9e500cb4a0f&nd=1)
 • Cerebral Palsy Special Education | Options for Your Child(https://www.cerebralpalsyguide.com/community/special-education/)
 • Accessible College Partnership with the Reeve Foundation(https://accessiblecollege.com/2021/07/27/accessible-college-christopher-dana-reeve-foundation-partnership-continues/)
 • Navigating the Transition to College with Paralysis(https://s3.amazonaws.com/reeve-assets-production/Navigating-and-Transitioning-to-College-with-Paralysis.pdf)
 • A Wheelchair User's Guide to Preparing for College and How to Secure Housing and Manage PCA Services at College(https://accessiblecollege.com/2022/03/08/wheelchair-college/)
 • When Students with Health Conditions Transition to College(https://accessiblecollege.com/2019/06/24/when-students-with-health-conditions-transition-to-college/)
 • How Can Students with Health Conditions Successfully Navigate the College Transition?(https://accessiblecollege.com/2020/01/21/how-can-students-with-health-conditions-successfully-navigate-the-college-transition/)
 • Perkins School for the Blind-College Readiness Resource Center(https://www.perkins.org/college-success/resource-center/)

Question 3

Transitions

Accepted Answer

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®(https://gottransition.org/)
 • Helping Young People with Disabilities Successfully Transition to Adulthood(https://blog.ssa.gov/helping-young-people-with-disabilities-successfully-transition-to-adulthood/)
 • How to Help Students with Disabilities Transition to Adult Life(https://lesley.edu/article/how-to-help-students-with-disabilities-transition-to-adult-life)
 • Life Stages & Transitions(https://www.enablingguide.sg/disability-info/life-stages-transitions)
 • Transition Planning(https://www.arisecoalition.org/transition-planning.html)

Question 4

Finance

Accepted Answer

How to handle finance as an affected individual (disability benefits, etc.)

• Social Security Disability Tips(http://www.dysautonomiainternational.org/pdf/NOSSCRflyer.pdf)
 • Benefits and Financial Help in the UK(https://www.gov.uk/browse/disabilities/benefits)
 • Benefits for People with Disabilities(https://www.ssa.gov/disability/)
 • How To Get A Loan If You Are Receiving Disability Benefits(https://www.nerdwallet.com/uk/loans/personal-loans/loans-for-people-on-disability-explained/)
 • The Fully Accessible Guide To Paying For College For Students With Disabilities(https://www.bankrate.com/loans/student-loans/guide-to-paying-for-college-with-disabilities/)
 • Overview of Medicaid Waiver Programs (for every state)(https://www.kidswaivers.org/)
 • USAGov's Official Guide to Disability Services(https://www.usa.gov/disability-services?_gl=1*k9bj1p*_ga*MTUxNzQ0OTk4Ny4xNjk1Nzc4MzAy*_ga_GXFTMLX26S*MTY5NTc3ODMwMi4xLjEuMTY5NTc3ODU0NC4wLjAuMA..)

Question 5

Housing

Accepted Answer

Here are some resources about modifications you can make to your home to suit your needs and wants.

• Home Modifications - Americans for Independent Living (https://www.afil.org/home-modifications/)
 • A Guide to Homeownership Programs for People with Disabilities (https://www.moneygeek.com/mortgage/homeownership-for-people-with-disabilities/)
 • Disability Housing Programs and Resources for Adults With Special Needs (https://www.fiscaltiger.com/disability-housing-programs-resources-adults/)
 • Assisted Living Options for Young Adults With Disabilities (https://www.verywellhealth.com/assisted-living-options-1094357)
 • Housing Resources for People With Disabilities (https://uphomes.com/blog/homebuyers-with-disabilities/)
 • Home Improvements for people with Disabilities (https://www.bankrate.com/homeownership/home-improvements-for-people-with-disabilities/)
 • Administration for Community Living's Directory for Centers for Independent Living (https://acl.gov/programs/centers-independent-living/list-cils-and-spils)

Question 6

Transportation

Accepted Answer

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(http://www.adamobility.com/)
 • Controls: *NOTE: These links are for advanced controls. The companies that provide the adapted vehicles help you with mechanical hand controls
	- EMC​(https://electronicmobilitycontrols.com/)
	- Paravan(https://www.paravan.com/)
 • Wheelchair Lockdown Systems:
	- EZ Lock​(http://www.ezlock.net/)
	- Q'Straint(https://www.qstraint.com/)
 • Adapted Vehicles:(https://www.gov.uk/transport-disabled) (*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​,(https://www.braunability.com/us/en.html) VMI,(https://www.vantagemobility.com/) Rollx,(https://www.rollxvans.com/) Freedom Motors,(https://www.freedommotors.com/handicap-vehicles-for-sale/?keyword=wheelchair%20accessible%20van&utm_feeditemid=&utm_device=c&utm_term=wheelchair%20accessible%20van&utm_source=google&utm_medium=ppc&utm_campaign=NE+-+Broad+Match+-+Beta&hsa_cam=20558123721&hsa_grp=155307731164&hsa_mt=b&hsa_src=g&hsa_ad=674371909645&hsa_net=adwords&hsa_kw=wheelchair%20accessible%20van&hsa_tgt=kwd-295094761390&hsa_ver=3&gclid=Cj0KCQjwpc-oBhCGARIsAH6ote81KDVpiIzLfduLSNcxSXFfRm-l3S9_l5JzHt4toRH-eDYZ1bKvJSkaAtBwEALw_wcB) ATC,(https://www.atconversions.com/) AMS,(https://www.amsvans.com/) Toyota Mobility,(https://www.toyotamobility.com/mobility-solutions/wheelchair-accessible) Honda Mobility,(https://www.honda.com/) Chrysler Mobility,(https://www.chrysler.com/) Ford Accessibility,(https://www.fordupfits.com/accessibility/) General Motors(https://www.gmenvolve.com/fleet/vehicles/upfit-applications/accessible-vehicles)
 • Mobility Works(https://www.mobilityworks.com/)
 • Adaptive Equipment Funding | Ford Accessibility Program(https://www.fordupfits.com/accessibility/assessment/adaptive-equipment-funding/)
 • Disability & Driving in the UK(https://www.gov.uk/transport-disabled)
 • Transport Support Services for Disabled People in the UK(https://www.gov.uk/transport-disabled)
 • "009 - Traveling with a Disability" Two Rare Mama Bears, a Cure CMD Podcast(https://open.spotify.com/episode/4gcff3McFsOdE02s2dsyp3?si=bb9b5bbd02444b6b&nd=1)
 • "006 - Adaptive Driving and Adaptive Vehicles - Simon Cantos" Two Rare Mama Bears, a Cure CMD Podcast(https://open.spotify.com/episode/1mxYb1vnu6ajLFG8M7HUWS?si=3c4b1280ffd44538&nd=1)

Question 7

Recreation/Community

Accepted Answer

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(https://ourodyssey.org/virtual-meet-ups)
 • Young Adult Representatives of RDLA (YARR)(https://everylifefoundation.org/young-adult-representatives/)
 • Cure CMD Peer-to-Peer Match & Mentorship(https://www.curecmd.org/community-peer-match)

Question 8

Independence

Accepted Answer

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(https://globalgenes.org/wp-content/uploads/2014/07/GG_toolkit_nine_20140725_web.pdf)
 • Careers in the UK(https://www.gov.uk/browse/disabilities/carers)
 • Disability Equipment in the UK(https://www.gov.uk/browse/disabilities/equipment)
 • Directory of Disability Service Offices(https://www.nasddds.org/state-agencies/)
 • State Vocational Rehabilitation Agencies(https://rsa.ed.gov/about/states)

Question 9

Look at what young adults in the CMD Community have accomplished!

Accepted Answer

• CMD Community Member's TikTok Accumulates Over 40,000 Followers(https://www.curecmd.org/post/student-tiktok-accumulates-over-400-000-followers)
 • Three Days of Teaching Future Doctors(https://www.curecmd.org/post/three-days-of-teaching-future-doctors)
 • How I Made the Official Cure CMD App(https://www.curecmd.org/post/official-cure-cmd-app)
 • Cure CMD Community Member Makes Her School Research Project Relate to Her Personally(https://www.curecmd.org/post/meet-molly-wagner)
 • Community Member, Jonathan Lengel, in the Netflix movie: 13: The Musical(https://www.forbes.com/sites/keelycatwells/2022/08/01/jonathan-lengel-makes-debut-performance-in-netflixs-movie-adaption-of-13-the-musical/?sh=73f4babd115e)
 • Quest Magazine Features Community Member, Justin Moy, and His Journey Pursuing a Career in STEM(https://www.mda.org/quest/article/profiles-in-stem)
 • 'Ordinary Joe' Actor with MD Brings Life to TV Character With Disability(https://musculardystrophynews.com/news/ordinary-joe-actor-md-brings-life-tv-character-disability/)
 • Annie Live!: My First-Hand Experience in a Television Production(https://www.curecmd.org/post/annie-live-my-first-hand-experience-in-a-television-production)
 • Netflix's 'The Healing Powers of Dude' Sophie Kim and abilityE(https://abilitymagazine.com/netflixs-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(https://open.spotify.com/episode/2i3yPIeE3KFkQc5mAzcZko?si=o5EBDXLqRJyq8dzE8stAEw&dl_branch=1&nd=1)

Young Adult Resources

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