ONCE UPON A GENE - Episode 069 - Ben's Friends- A Rare Disease Social and Support Platform with Ben Munoz
Rare Disease Day is on Sunday, February 28th, 2021 and I'd love to know how you're celebrating and what Rare Disease Day means to you. Share a short voicemail message with me below!
Ben Munoz is the President and Co-Founder of Ben's Friends. The organization is dedicated to ensuring that patients with rare disease or chronic illness and their caregivers, family and friends have a safe and supportive place to connect with others. They're a network of patient communities for anyone affected by rare disease or chronic illness and they're growing every day.
EPISODE HIGHLIGHTS
Tell us about yourself and how you became part of the rare disease community.
My journey into the rare disease space was in 2006. At the time, I was a student in business school when I got a pain in the back of my head and rushed to the emergency room. After an emergency surgery, I learned I had a rare type of stroke at 29 years old. It was called an Arteriovenous Malformation (AVM). I was in ICU for a while after surgery and later was dealing with a lot of panic around the condition and navigation information, treatment, risks and the overwhelm of it all. I had resources online through support groups and mailing lists, which is when I learned of the possibility of connecting with others who had my condition, though it was limited. I began thinking of how to create a website where people could connect with others with similar conditions. I started with a Facebook community of others with AVM. With the success and growth of the group, I went on to creating an additional support group for Trigeminal Neuralgia (TN) which was also successful and then Ataxia. I noticed the trend that people were looking for support and that there were very few support opportunities. From that, the non-profit was founded and we have more than 40 communities to date, each focused on one rare disease.
What compelled you to seek out support so quickly?
I was in a dark place and remember the mix of emotions- thankful to be alive and survivor's guilt, the worry about what could happen tomorrow and feeling like a ticking time bomb with the AVM in my brain. I listened to a Tony Robbins recording and recall the energy he had, the inspiration and tools he provided and that motivated me to do something with the opportunity and turn the darkness and depression around and do something positive.
Has there been a ripple effect that's resulted from being a Ben's Friend's contributor?
Members have gotten the support they've needed at a critical time, they want to give back to the community and they can contribute in the same way that someone did for them when they joined as a new member. We've built a pipeline for this where we recruit, train and develop moderators and provide leadership opportunities beyond that. Greeters, moderators, moderator support and executive directors have all started as members of a community.
What is your favorite Ben's Friends story?
There was a member of the Trigeminal Neuralgia or suicide disease community who was contemplating suicide. The member wrote in a year after an incident and described how she was standing on a tall bridge in Portland and about to end it, decided not to and found the Trigeminal Neuralgia community of others going through the same thing she was. It gave her the strength to become a moderator helping others and went on to be a suicide prevention advocate. She testified in front of Congress a few times for programs for those contemplating suicide.
How do people join Ben's Friends and what if their disease isn't listed on your website?
Go to our website, find your listed community, click to join, say hello and share your story when you're comfortable. If you don't see a condition listed, make a request to launch a new community. There is no cost to sign up.
LINKS AND RESOURCES MENTIONED
Make a Donation to Ben’s Friends
https://www.bensfriends.org/paypal-donation/
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