I am getting to a good place with my project proposal. This is good, and hopefully, I do well, but it isn’t what I need to be working on right now. School has a tendancy to place it’s restrictions on the goals one has in thier head. But, here it is, an updated version of my mind.
Even with support groups families can feel disconnected to others who share their diagnosis, The Share & Care Network is in need of a system of resource organization that will enable new and existing families to easily access quality of life treatments, everyday care experience, and share personal stories while protecting their privacy.
Share & Care Cockayne Syndrome & Trichothiodystrophy Network is a non-profit that supports families of children diagnosed with Cockayne Syndrome, Trichothiodystrophy, and Xeroderma Pigmentosum-Cockayne Syndrome. The group as a whole helps parents adjust to their child’s new diagnosis, organizes annual conferences, stays in contact with doctors to share information on new treatments and studies, keeps us in contact with each other, amongst other things such as sibling support and empathy in grief.
My goal with The Unwinding Chrysalis is to become another level of support and contact for these families. First, it will offer a more direct line of support for families just getting their diagnosis, having something tangible to hold will help them feel less disconnected in this new world. The Unwinding Chrysalis uses the stages of grief to help educate about Cockayne Syndrome, Trichothiodystrophy and Xeroderma Pigmentosum-Cockayne Syndrome while acknowledging the emotions that families new to the network may be experiencing and share stories from existing families. Included articles will be about challenges in care that we face as parents, choosing a wish organization for an affected child, what each of us can do to help the network as a whole, challenges in caring for our unaffected children, and ways that we can each deal with our grief in a positive and effective manner. To chronicle the known medical issues and care of an affected child I will also be designing the wireframe for an electronic book. This e-book will offer access to specific types of care pertinent to the disease, information on past studies, and expand on information from the articles in The Unwinding Chrysalis. Availability to both the magazine and e-book is a big factor for each family, whether new or not, therefore the e-book will be under the domain of Share & Care CS & TTD Network. However, The Unwinding Chrysalis will be maintained as a non-profit magazine for the annual review of current topics. For each new family, a current copy will be sent for free, but I hope to continue with an income-based price adjusted subscriptions.
Within the scope of this project, I will be thinking about awareness and advocacy through infographics, printmaking, and vinyl stickers. The infographic is a deliverable meant to be accessible to the general population. It is my hope that it will help people understand what Cockayne Syndrome, Trichothiodystrophy and Xeroderma Pigmentosum-Cockayne Syndrome are and see why we need help with research and funding. Vinyl stickers will be handed out with the magazine, these stickers will reflect images from the infographic and can be displayed anywhere that vinyl exists currently. The prints will be available as a fundraiser, in the scope of this project the profits will go to Share & Care CS & TTD Network.