Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
At present, Ben’s Friends has 40 plus communities. Each one of them is monitored by volunteer moderators, interns, and ModSupport members.
Among other things, our volunteers introduce new members so that they can be welcomed by the other members. They also screen requests for membership and ensure that all our guidelines are followed so that we remain consistent with our mission of providing a safe and supportive space for patients and their loved ones.
Effective communication, both within each community and among our team members, is a very important ingredient in accomplishing our mission.
Aside from getting in touch with members, our volunteers also constantly communicate with each other to seek advice on how to handle certain situations, keep everyone updated on the status of each community, or get to know everyone better.
We are fortunate to have as one of our volunteers, Mark Wilson, who aside from being a moderator of our Living with Primary Sclerosing Cholangitis community, also takes care of Ben’s Friends email platform.
In this blog, Mark shares his Ben’s Friends story as well as the other things he volunteers to do in the organization together with other moderators.
Please tell us about your Ben’s Friends story.
In 2011, I was diagnosed with a rare autoimmune disease of the bile ducts of the liver called Primary Sclerosing Cholangitis or PSC. It was during this time that I found Ben’s Friends.
The PSC forum was a great life saver for me to understand just what this disease was.
I met so many folks dealing with the same health problems as I was going through which was an encouragement to me through very difficult days.
It was through my interactions on the PSC forum that I was invited to become a moderator.
Even as I was fighting for my life I desired to give back to others and give them hope as they dealt with the uncertainties of a life with PSC.
In July of 2015 with a MELD of 36 I received the precious gift of life with a liver transplant.
What a tremendous blessing it has been to have this new lease on life. It has driven me more to do all I can to support the PSC community and be an encouragement to others battling this life threatening disease.
All I do here on this forum is not about me or to make me look good, I truly want to have that servant’s heart and be a blessing to those that come to us for help.
Aside from being a moderator, tell us about the other things that you do for Ben’s Friends.
Besides being a moderator, I have been given the privilege of managing the Ben’s Friend’s email platform.
I set up new accounts for the moderators, interns, and internal staff of Ben’s Friends as they are needed and manage the distribution lists that so many announcements such as about training and policies as well as other support emails are sent to the various communities.
I also participate in various Basecamp and Moderator Discussion threads covering a variety of topics in the Ben’s Friend’s communities.
(Editorial Note: Managing the email platform of Ben’s Friends is quite a big job considering that we have 40+ communities.)
Can you give a few examples of support emails that we send?
Our moderators in the different communities will often welcome new members using their Ben’s Friend’s email account. This makes for a more personal welcome.
There are also times when we must contact a member in a community and that is sometimes done directly through email vs posting a private message on discourse.
The same would be when communicating with a patient on one of the forums who needs a little more personal attention. Sometimes email will be used for that.
How does the distribution list work?
A distribution list is an email list of multiple names.
For example we have a list that allows us to send an email out to all the moderators in our discourse communities at one time instead of having to insert each moderator’s individual email addresses into each email.
They are very handy. We also have the ability to restrict the ability to send to our distribution lists to certain people which also prevents the list from being spammed.
You mentioned that together with other moderators, you also participate in Basecamp and Moderator Discussion threads, can you tell us more about these?
Basecamp allows us to have a flow of conversations among a certain group of people. For instance we have one totally dedicated to email management. We discuss individuals we are issuing an email, what lists they will be assigned to receive and whether they are to be invited to Basecamp. Things like that. It’s like a chat group so everyone’s responses are together for all of us to see at a glance.
Another discussion I participate in is the Ben’s Friend’s Moderator Discussion thread. Here any of the moderators from any of the BF communities can bring up topics of discussion. Anything from a problem poster and how we should deal with it to someone in great mental anguish and they need immediate personal support.
We discuss how that was dealt with and the results of the intervention. We also have a discussion group that I’m involved in where we discuss other moderator related issues on a much smaller list of folks.
These are just a few examples of my participation in Basecamp discussions. We are glad to have Ben also monitoring these discussions and for his contribution to the topic as the need arises. It’s an excellent way for us to collaborate as a group.
What do you love most about being a part of Ben’s Friends?
I love being able to help others dealing with the same life threatening disease that I almost died from. It is very rewarding to give back and endeavor to be a blessing and encouragement to others. There are times we even speak with patients by phone that need some extra attention and care and that is always a blessing to be able to be there for them in their time of need.
What could life have been like without Ben’s Friends?
When I was at my lowest physically, Ben’s Friend’s gave me hope. It’s one thing to deal with a life threatening illness, but it’s another thing once you are thoroughly educated about that disease. It makes dealing with it much easier.
We must give our patient communities hope, and that even though they face these serious illnesses, they must “live life to its fullest” along the way. We can’t just get down in the dregs of sickness, but we must live life with hope! It is my pleasure and privilege to serve. Thanks.
