Updating and expanding community platform to support connection among people with rare illnesses
Hi all, TJ here, as I was reading through your site realize that. I swoop in and out without you knowing much about me or why I am up to my eyeballs with Bens friends.
I had a serious accident a number of years ago. I fractured my back, which changed my career, and left me doing research and teaching and helping my wife with her family business. In the course of my recovery, Psoriatic Arthritis (a disease that took both my sister's and mother's lives with complications) decided to rear its ugly head in my life, too. I have the spondylitis type and am starting to fuse. I was also blessed along the way with Sjogrens, facial neuralgia, and this past year colon cancer.
My granddaughter lost her parents. Her dad (my son) was KIA in Iraq, and her mom a few months later in a car accident, in which she herself was also brain injured. As a result of that accident, she has significant developmental delays, ADHD, is legally blind (she has sight but just can’t process well enough to consistently process information), has seizures, motor problems, and just about everything else that goes with a traumatic brain injury. In a strange quirk of fate, as she was the child of two adopted parents and has no blood relationship to me, she also developed psoriatic arthritis, and most recently, severe Crohn's disease.
I first came upon Ben's Friends in its earliest days. There was a new community at that time with fewer than 100 members for Psoriatic Arthritis. It was like a new world for me, and I was hooked. Despite the fact I had a great academic knowledge of the disease, it was like a breath of fresh air to hear from others how to live with my disease. It was great to be able to share my knowledge.
Madere eventually sucked me into a larger role, which couldn’t have come at a better time, as it was just as I was finally being forced into retirement.
Part of that role was building communities and helping keep an evidence-based base to what goes on. As we all know, there is some pretty wild stuff out there, and the chronically ill are easily preyed upon, either intentionally or with good but misguided intentions.
Now my role has changed again. Ben's Friends has expanded beyond our capabilities, and we have a waiting list of diseases families wanting to be served. The platform we use (Ning) is no longer being supported by the designers. Over half of our patients are on mobile devices, which our current platform can’t serve. We are doing something we hoped we would never have to do, and that is making our needs public and asking for support.
In the next year we must move our communities to a new platform and make them mobile accessible. We are designing a new website as doorway to all of our communities and are developing new open source community software so that we will never be held captive by a vendor again.
Much of the preliminary work has been done. But, we need real professionals to fine-tune and customize what we have to make it meet the needs of our members.
In November, this is what happened at Ben's Friends:
Communities - 31
Communities greater than 1000 - 11
Members - 53,824
Unique Visitors - 95,844
Traffic - 129,985
Page Views - 384,289
Avg. Time Site - 3:38 minutes
Twitter Followers - 4,788
FB Followers - 79,986
We hope to raise $100,000.00 USD to build our new platform and add as many as 100 new communities. We are receiving great support from our board, our advisory board, and some corporate sponsors such as Google and Yahoo who have responded to grant requests. I would never want have any members feel they are being pressured to participate, but if you know someone who can, please ask them. If they can participate, every gift towards this project is appreciated, and every dollar will be used to develop our new platform. We are all still essentially volunteers.
Bens Friends changed my life. It has done the same for others. We will be sharing many of those stories. I know all of you have yours. Please email me at ■■■■■■■■■■■■■■■■■■■ with any questions you might have. Please for me and the others help us keep the lights on and move to the next level.