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Patient Voices Blog
June 29, 2021

June Volunteer Spotlight: Toni Kay Mangskau

I have advocated on behalf of healthcare and caregiving issues, community corrections and racial injustice. My daughter now has 6 years sobriety and is enrolled in college to become a social worker, just like her mom! I’m so proud of her. My son still struggles with his disease at times, but knows how to advocate on his own behalf. I have since had my own medical struggles and have been caregiver for my parents and disabled brother. It seems I have found my calling in life. I’m so glad I made it through some very tough times and my kids were learning along the way. My goal is to help others find their voice. Advocacy work has been the mechanism to accomplish so much. We need to motivate others. I hope sharing my story will provide encouragement to others.

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  2. June 27, 2018

    UPDATE: PCHETA moves forward

    Today HR 1676, the Palliative Care and Hospice Education and Training Act (PCHETA), passed the House Energy and Commerce Subcommittee on Health by voice vote and was reported to the full committee for consideration. PCHETA would expand the palliative care research, training, awareness and career development that is vital for improving access to palliative care for the millions of seriously ill infants, children and adults in the US who need these services to maximize their quality of life.

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  3. April 11, 2018

    Using Patient Stories to Inform Advocacy

    "The squeaky wheel often gets the most attention and the results," she reminded us, "but we need to make sure we hear the voices of those individuals and communities that are not always heard." 

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  4. April 9, 2018

    Advocates refuse to 'fail first'

    Have you ever gone to the pharmacy to pick up a medication and were told “I’m sorry, we cannot fill your prescription because of your insurance?” As a pharmacist, I’ll say that it’s a common conversation we have that often causes stress, confusion and an overall daunting health care experience for people whether the medication is ultimately covered or not

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  6. November 22, 2017

    She said, "You have to stop fighting because it's killing you."

    Emily Moore was my caregiver for three years while I went through one of the most difficult times of my life. She started when she was 16. She is the most remarkable caregiver I have ever had. She stayed with me through the worse part of my life and there are not enough words in the English language to express my sincere gratitude.

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