Who needs facebook....this is the place for me

General
1

I just want to say thank you for this group. It has been so wonderful to have a place to come. Where I knew I was not nuts, & where I knew others understood EXACTLY what I was feeling. A place where I could come for advice and support. You guys are the best

2

I'm incredibly thankful for this group as well!

3

Thanks, Elizabeth, for this posting. It's something we've been thinking about. Facebook groups are good, but we feel we have something special here. As part of a larger network of rare disease communities, http://www.BensFriends.org, we are able to offer more services such as:

1. access to free legal help

2. access to free or discounted medical advice/information

3. programs to help people raise funds for their favorite charities

4. patient guides written as e-books

What else could we do to help our members with their medical condition and their lives? We love new ideas.

--Ben, ■■■■■■■■■■■■■■■■■■■

4

I have been blessed by this group too. I feel not so alone and I feel understood. Thanks for the post...but I secretly do have fun on FB :)

5

agreed!!!!!!!!!!!! its nice to know that you can say feel or think anything and its all OK!!!!!!

6

I love FB because I can keep up with distant family and friends. BUT this is the place where I feel comfortable about myself because the ones on FB do not understand me like all of the members here. Yes, it is great to have a place to come where you know people don't think you are nuts!

7

Wow, Elizabeth, well said! And it IS nice to know you aren't nuts, others can relate, and those others are also compassionate people That's a great gift.

And you have really helped to lift my spirits, along with Scott. I really felt good getting your messages.

I look forward to interacting with everyone here and hope we can all make this situation easier for all through friendship and support.

8

Thanks Elizabeth! you made my day!

9

I agree, this place makes me feel "normal" (whatever that is).