Leveraging Our Talented Community for Support and Collaboration

By Ranae Beeker 

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My name is Ranae Beeker, and I am responsible for facilitating, running, and moderating the Women on Wellness (WOW) support group. Over the past five years, our remarkable community of women has transformed into a close-knit family and friends network. 

In addition to the WOW group, I also help facilitate the Wellness Hour support group, which has also fostered a strong sense of community/family among its terrific members. 

In the role of facilitating and co-facilitating the WOW and Wellness Hour, I have built an email list for both groups. We take minutes/notes from both of these Gathering Groups (WOW, Wellness Hour) and I send them out to our members, to share the great intellect of the groups. I will also use these email lists to share important information and for members to ask questions of each other.  

From the outset, we recognized the invaluable resource that our community provided for each other in addressing questions and concerns specific to FSHD. Consequently, we have consistently sought to establish an accessible platform for our members to reach out with inquiries or seek conversations. Initially, our members envisioned a centralized communication channel. I created a Google Group with approximately 300 email addresses from our Wellness Hour group. However, the Google Group option has not been as well utilized as anticipated. Needless to say, I haven’t updated this list in about 1 year. My Wellness Hour Email List now has over 450 names on it, so the Google Groups list is a bit out dated. 

Despite this challenge, we remain steadfast in our commitment to providing support to FSHD communities. When questions arise regarding specific needs or requests, I actively engage with our community. I anonymously (I do this because of the 450 mails that deserve confidentiality) submit these questions to our vast network, and the responses are consistently exceptional. I then compile these responses and provide them to the original questioner. 

On numerous occasions, I receive inquiries from individuals expressing interest in the information gleaned from these responses. In response, I share a de-identified list of responses with the requestor. Additionally, I facilitate private conversations when requested to address specific concerns or conversation needs/wants. 

There are several of us FSHDers who pool thoughts, ideas, and concepts for our Gathering Group meetings. We all have expressed the desire to have a social media platform of sorts, where we can facilitate these discussions. We are intelligent individuals with a strong desire to identify and fulfill this need. It will happen, until then, we encourage requesting information of your FSHD peers via the current method with the knowledge it will be more than likely it will be beneficial to the entire community! Send me your questions, discussion needs, newly identified successes and more, so that we can all benefit from you!

If you know me, you know I am not one to miss an opportunity to share a need! If you are someone with an IT, Social Media building background, with ideas on this need. Please do reach out to me!!