Tag Archives: volunteer

IBD Day On the Hill 2019

IBD Day on the Hill

This year I attended the annual “Day on the Hill” with the Crohn’s and Colitis Foundation (the Foundation) in Washington, DC. It’s a two-day advocacy event where people who have been touched by inflammatory bowel disease (IBD), either as patients, caregivers, or healthcare professionals, meet with legislators and/or their staff.

That’s the postcard version: but let’s break this down so it makes more sense.

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Creating Your IBD Elevator Speech

How to Create Your IBD Elevator Speech

An elevator speech or elevator pitch is a quick summary of a topic that can be given in about under a minute: just enough time to take an elevator ride. It’s usually thought of in a business sense, like a sales pitch or an idea you have that you present to someone in management upon a chance meeting (such as in the elevator). The use has been expanded to mean any prepared and rehearsed speech that you can give quickly on a moment’s notice. The purpose of this article is to guide you on crafting your elevator speech about your inflammatory bowel disease (IBD).

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Community Doesn’t Just Create Itself

About IBD Podcast 32 – Community Doesn’t Just Create Itself

What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke’s recipes!

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Vote In Real Elections

Vote In Real Elections, Not Online Ones

You’ve seen the posts: “Click like” or “Retweet” to vote! An interaction with a post is a “vote” and after a certain amount of time the “votes” are tallied and a winner is declared. Magazines may use this type of crowdsourcing to decide their “best restaurants” or a photography web site may use it to choose a “cutest baby” photo.

I’ve been online, running web sites for myself and for others, since 1996 and this type of popularity contest is nothing new. It’s never going to go away because it’s inherent in our culture. It might be something we have to accept, up to a point. However, I take issue with using this type of “voting” for where we are now: choosing a “best” person from the online chronic illness community. Continue reading

About IBD Podcast Episode 10 With Brooke Abbott

About IBD Podcast 10 – Advocacy With Brooke Abbott

Are you ready to tell your story? Your legislators in Washington D.C., in your state, and your home town want to hear from you about how IBD has affected your life and the legislation you care about. Brooke Abbott of The Crazy Creole Mommy Chronicles and Amber tell you how to get started in health activism and how to make your voice heard in our government!
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World IBD Day Isn't For You

Why World IBD Day Isn’t For You

If you have inflammatory bowel disease (IBD), or you love someone who does, you don’t need an awareness day to tell you the impact it has on your daily life. People living with Crohn’s disease or ulcerative colitis and their caregivers already have a vast education on IBD that can only be gained through experience. World IBD Day isn’t really for you.

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Do I Ever Run Out Of Ideas?

MyWriting Routine*

Everyone has their routine, right? So, I don’t do this each and every time I sit down to write, but it’s a pretty fair description of how most days go. I have to clean my desk off and I have to get coffee, but other things are subject to change.

Frank Garufi Jr of The Crohn’s Colitis Effect asked me a question that I actually get asked all the time, so I felt it was worthwhile to answer in writing.

“Don’t you run out of ideas to write about?’

And actually, no, I don’t. Now, that’s not to say there aren’t topics that I drag my feet on writing, or that I don’t have the resources to write at a particular time. But I never actually run out of ideas.

There are times I’m tired of writing. There are times that a particular topic is so personal that I can’t seem to get it out of my brain and into my computer. There are times when I just can’t find enough sources to write about a topic intelligently. But there are never times that I don’t actually have any ideas.

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The Dangers of “Too Much” Advocacy

Rope Bridge

The way forward looks treacherous. But we must work together to find our way across.
Image © Sean Kearney

I had a recent revelation as I was planning an event for a group I volunteer with for one of my children. I am a volunteer, as so many parents are, and I spend a fair amount of time working with other parents and within the community to plan fun and educational events for our kids. But I am beginning to wonder if this is the best use of my time and if it’s providing the best experience for my children. And then it hit me – my thoughts were directly related to advocacy for chronic illness. Continue reading