Tag Archives: advocacy

About IBD Podcast Episode 73 – You’ve Got to Find the Humor in Things

Do you have a sense of humor about your IBD? Jenna Ziegler of The Comical Colon found that keeping her sense of humor has helped her through the challenges she faced after being diagnosed with ulcerative colitis in college. After fighting her way back to health after severe flare-ups and carving out the life she wanted for herself, Jenna received another stunning diagnosis: a rare liver condition called primary sclerosing cholangitis, or PSC. Over the years she has done the hard work to learn how to be an empowered patient and she shares her 5 tips on how you can learn to advocate for yourself.

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About IBD Podcast 53 – He Would Do the Same for Me

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Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.

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About IBD Podcast Episode 52 – Summer of Activism: Connecting the Numbers to a Story

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In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.

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About IBD Podcast Episode 51 – Summer of Activism: It’s Now or Never

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If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn’s disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn’s and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist.

It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:

http://aibdnewsletter.aboutibd.com/music

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About IBD Podcast Episode 50 – Summer of Activism: Have Your Voice Heard on the Hill

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The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.

It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:

http://aibdnewsletter.aboutibd.com/music

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Summer of Activism: IBD Advocates You Should Follow on Social Media

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Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.

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Summer of Activism: Navigating Your First Day on the Hill Meeting

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Patient advocacy groups often take part in “Day on the Hill” events. This is when an organization sends a group of people to Washington DC to meet with the offices of federal representatives. I’ve attended several hill day events over the past several years with different patient advocacy groups. At this point, I’m ready to let you know some of my tips and tricks so that when you’re ready to get started and do this work, you’ll be prepared.

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About IBD Podcast Episode 49 – Summer of Activism: Attending Day on the Hill

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How does an IBD patient attend Day on the Hill events and meet with the offices of congressional representatives in Washington DC? What is it like to go to these events? In this episode I describe how I got involved in hill day meetings, why I do it, and what the process is like to attend. I also offer you my tips on how to make the best of the time spent in the capital in order to make the biggest impact on the people who can affect change in the lives of IBD patients.

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Summer of Activism: 10 Ways to Get Your Kids Involved in Advocacy

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We tend to think of politics as being for adults. But how do adults become engaged citizens who take part in their community? They start as children, learning from parents about the importance and benefit of volunteering, voting, and understanding the challenges and opportunities in their community. There’s so much that parents can do to raise children to be active community members. In addition, some of the many skills that are learned along the way, include public speaking, networking, teamwork, strategy, and communication. Continue reading →

About IBD Podcast Episode 48 – Getting Kids Involved in Advocacy

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How young is “too young” to get kids involved in activism? Gastroenterologist and activist Dr Meenakshi Bewtra started her kids on their activism journey at birth and continues by bringing them to marches, voter registration events, and postcard writing parties. Dr Bewtra shares her tips on how you can involve your kids in activism, why you should, and how it might make your life as a parent — and activist — a bit easier.

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