A Conversation With Advocate Ann Kopf About the Aware in Care Kit

When a person advocates for themselves, they can achieve great things. I recently had a conversation with an advocate for the Parkinson’s Foundation, Ann Kopf. Ann lives in Milwaukee and works with different staff members in the foundation to support others with Parkinson’s. I emailed her to learn more about her advocacy efforts.

Excerpts of our conversation follow.

SF: What is your connection to Parkinson’s?

AK: I was diagnosed with Parkinson’s in February of 2016. My dad had Parkinson’s for about 25 years, and his sister was also diagnosed with this disease.

How did you get involved in the Parkinson’s Foundation?

I was really down and out when I was diagnosed, and after some time had passed, I decided to take the bull by the horns and get involved as a volunteer. I noticed on the [Parkinson’s Foundation] website that they were expanding their largest fundraiser to include Milwaukee in 2017.

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Moving Day Milwaukee [the fundraiser] was born, and I quickly started a team, R We There Yet!? and became the team captain. I enjoy fundraising and currently remain the top fundraiser for this event. In the fall of 2020 I became an ambassador for the Aware in Care kit program.

I’m not familiar with that program. What is an Aware in Care kit?

The Aware in Care kit is a tool used by people with Parkinson’s in the hospital, whether it is a planned or unplanned visit. The contents of this kit helps educate the patient how to advocate for the best care possible while also educating hospital staff on the importance of timely medication for everyone with Parkinson’s.

Why should people with Parkinson’s get this kit?

Everyone with Parkinson’s should get a kit because it will help them understand the risks associated with hospital stays. The kit, which can be obtained for free, provides tools that play an active role in their own care. They will be well prepared for a hospital visit and will be able to develop their own strategies with their care partner to get the best possible care.

What do you do as an ambassador for this program?

As an ambassador your main duty is to educate. We educate:

1. The community — people with Parkinson’s, care partners, and family
2. The clinicians who treat those with Parkinson’s — [we] spread the word [about] resources available
3. The hospital staff — If staff know what people with Parkinson’s need and why, they will be more likely to adjust the care PD patients receive.

Who can I contact to get more information? How can people get this kit?

The person that you can contact at the [Parkinson’s Foundation] is Anne Wallis. She can be reached directly at [email protected].

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Thank you, Ann, for your insight on this important program. Check out the Parkinson’s Foundation’s website to find an ambassador near you.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.