Ways to Get Involved


Advice From Patient Advocate Diane Talbert

What Is It Like to Be Part of this Journey in Real Life?

I have asked myself this question a few times. I am on several social media sites; just because I can be. Sometimes I feel like I get swallowed up with trying to tell the world about me and what I’m doing that day. Most of the time we see the good things that people are going through, but what about the bad and sad things? 

It’s okay to share your wonderful family pictures of the great food you are having with your family. I often do this myself, but what about the days your family isn’t there for you or having dinner with you?

What does real life look like?


I loved seeing people’s accomplishments, connecting with old friends and sharing good things.


  • Do you understand there are people out there who rarely have good days and are reluctant to even talk about it with people on social media? They are alone. 
  • What about the person who wakes up every day in pain
  • Where does the person that just got diagnosed go? 


They just want someone to listen to them today. Where does their pain fit into your social media feed? Do they post before the family pictures, or after the cute pet or in between that picture-perfect food?

We’re Here for Each Other



  • In this community we talk about our feelings and what it’s like to have a disease that can change you, but also the effects it has on our family. 
  • We talk about things that make me blush. 
  • We talk about treatments, options, and what other people have gone through.


I like being a part of any community that I can have a strong bond with, and we’re always there for each other. Nothing is off limits as long as it’s said respectfully. We talk about things that no one wants to discuss in the outside world.

Come on by and check in to see what we are about. We very seldom tell you what we had for dinner, but that’s okay. We just decided to talk about real issues today. 

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