A Word From Seenie

We know. Right now, it just seems like bad news and more bad news, doesn’t it? And yet in some ways, we are fortunate to be rare disease patients. One of those ways is that we are part of a global Ben’s Friends community where we can go for understanding and empathy. Within this community, we talk openly about things that really matter to us and to our families. No annoying religious or political arguments, silly memes or lame jokes. And no judgment. We share, we compare, and we support each other, even though most of our community friends are known to us by screen name only.

Membership in the rare disease “club” does have a few benefits, and our membership in this community is one of them. Log in, drop by or stay awhile. Offer a kind word. Support someone who is struggling. Reach out for a pick-me-up yourself. The special bond of friendship is here, and this thread is open for your comments.

Stay safe and keep well

Seenie from Admin

PS wash your hands! https://youtu.be/-LKVUarhtvE

If login isn’t working for you, getting back into the community is easy:

Your “User Name” is your email address.

Then say you’ve forgotten your password (even if you remember it).

Follow the instructions. And there you go.

Welcome back!


Well said Seenie! I was watching tv the other day and heard the Doctor over NIH use the acronym “WIN” the way he and his team use it is “What’s Important Now?” It really struck a chord in me, not just for the global pandemic, but for us, as members of our wonderful communities. It’s a great way to prioritize our day, every day.

And when you wash your hands, don’t forget to dry the underside of your ring and your finger!

I do like the “WIN” family, friends, neighbors and this group has been important to me. I am not always leaving messages but I do come on and read and get lots of information since my surgery in 2016 for my aneurysm. Keep up the good work.

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