A huge communication gap

For a very long time there has been a huge communication gap between patients, organizations and the medical community. So, a group of long-time patient advocates decided it’s time to change that narrative once and for all. That is how The Waiting Room Entertainment was created. The organization is 100% volunteer based and non-disease specific. Demeshia Montgomery, Amy Geitzen, Dee Burlile and Rod Douglas set out to produce new exciting efforts to bridge the gap. After long discussions they agreed social media would be the best place to start.

The launch of the YouTube channel

On August 1st 2022, Demi released the first clip on the organization’s brand-new YouTube Channel while she was still in the hospital recovering from having two strokes. The clip received over two hundred views and confirmed there was a need for social media content made just for patients. So, the team got to work locating physicians and organizations willing to be interviewed. With the promise their interviews would be stored in a YouTube library that can be accessed by patients, organizations and the medical community for years to come.

Growing The Waiting Room Entertainment

The Waiting Room Entertainment then became the home for additional programs the team would create. Making it the base of the tree. The new programs are the branches, and the leaves are the volunteers that commit their time to all the programs without compensation. Tommy Fields, Tomisa Starr, Deborah Carlton and Monica Espinoza use their exceptional skills and talents to support the mission of the organization. They use the power of social media to share postings with their large friends list. They also help to create a warm, fun working environment and are essential to the team.

Jacob’s Hugs Registry for the scleroderma community

Jacob’s Hugs Registry was a project that Amy, Dee and Demi had created for their dear friend Jacob Davila when he passed away from complications with scleroderma in November of the previous year.

Many in the scleroderma community have become friends and the team felt this wonderful community should be able to support one another in their times of need. Over the years many patients have become sick or have passed away without the community having the means to get information or updates about their scleroderma friends’ status. Jacob’s Hugs Registry identified a gap in the community’s communication between scleroderma friends and scleroderma patients’ families that need to be addressed.

The registry was designed to allow patients to designate their chosen family member or friends to communicate with the scleroderma community in a structured way. Solving the problem of families receiving multiple inquiries or not having anyone to notify within the scleroderma community to provide accurate information to the public. 

The hope is to provide patients with a sense of security that all their scleroderma friends will receive accurate information from one reliable source. It also helps patients, friends and family to feel secure with whom the patient’s information is being shared with. Jacob’s Hugs Registry began a national scleroderma patient emergency registry. Each patient provides their name, type of scleroderma, phone number, email and physical address. Then they will provide two emergency contacts phone number and email that can be notified in the event of a hospitalization/emergency. The collected information is only be used to update the scleroderma community on Jacob’s Hugs Registry social media platforms.

The team also decided there was a need to help financially to support families struggling with the rising cost of funeral expenses, so they did. Adding a Go Fund Me campaign effort. That raises a minimum amount of two thousand dollars that is given to assist with funeral arrangements. 

Social interaction and networking opportunities

The team then looked at “what is missing?” and realized there needed to be an in- person/virtual social platform. To encourage social interaction and networking opportunities for all patients. Most of the team have been support group leaders for several years. They have heard lots of stories directly from patients expressing the loneliness they have had to live with. The feeling of isolation even within their own family sometimes, which is causing mental health issues that sometimes worsen their condition. 

The group said this must be addressed in a way that changes support efforts forever. Demi took to Facebook putting a post out hinting to her friends list she would be starting a support group. Let’s just say the response was extreme. With that information the team began carefully planning out social clubs. The first one is scheduled to launch on Rare Disease Day 2023 in Columbus, Ohio and the group will be attending a celebration event.

This group of patients and caregivers are showing the whole rare disease community that with a little motivation and a dream anything is possible! To date this organization has continued to grow with absolutely no funding and lots of love! They are still looking for a home for their hard work or corporate sponsorship that won’t alter the mission. The Waiting Room Entertainment team has seen a need and they have set out to meet that need head-on. 

For more information, please email Demeshia: thewaitingroomentertainment@gmail.com

The Waiting Room Entertainment YouTube channel: https://www.youtube.com/@thewaitingroomentertainment 

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