What is Shared Light Project?

Shared Light Project is a working project for a nonprofit to help create a support network for those living with rare medical conditions and mobility related challenges.

Currently, in Volusia County there is not a network or support group for us and there is very little support for wheelchair users and people with disabilities in general.

We want to change that, because the struggle is real and we need to meet others who truly understand the challenges we’re going through so we can help each other know YANA: You Are Not Alone.

As an ambulatory wheelchair user and someone who is living with multiple rare diseases, I know the challenges we face just trying to get through the day. Some days are easier than others, many times we feel better and slide backwards and have to start over. It’s both mentally and physically exhausting.

The goal is to raise awareness about Disability and how it can happen to anyone, at any age, and at any point in their lives.

Disability is NOT a bad word and we’d like to remove the stigma that many people feel related to discussing it, having one, and seeing people with disabilities.

Disability is NOT a bad word.

We want to use this platform to raise awareness about some of the rare diseases and conditions that affect us, family, friends, and others in this community.

Lastly, we will be using the nonprofit to advocate for financial assistance for those who need mobility aids (electric or manual wheelchairs, vehicle wheelchair lifts, hoists, canes, crutches, walkers, braces) and other necessary medical devices, transportation, treatments, doctors visits, etc.

This community will eventually behave as a monthly in person event as our board members are brought on and it continues to grow.

This community is primarily for those who are in need of support, but others are welcome to be here in support and learn too.