Welcome to our Changemaker Profiles blog series! Each edition will profile one outstanding social changemaker from the JVA client community. By sharing the stories of some of the incredible people we get to work with every day, each accomplishing extraordinary work in nonprofits, government, social enterprise and elsewhere, we hope we will bring a little light and inspiration to your day!
For this edition, we spoke with Amelia Schafer, who in June became the new executive director of the nonprofit Alzheimer’s Association of Colorado. Amelia has 20 years of experience with Alzheimer’s Association chapters in Colorado and Oregon.
1. Tell us about you and your organization and the social change you are trying to achieve.
“The Alzheimer’s Association of Colorado is part of a national organization with chapters all across the country. There are eight offices here in Colorado.
“Our mission is threefold. First is the advancement of research. Our vision is a world without Alzheimer’s, so to end Alzheimer’s we need to advance research. Second is the care and support for people affected today, including those who are diagnosed, family caregivers, and then the community at large. Third are our efforts to help reduce the risk of Alzheimer’s through brain health. I want to be out of a job someday—so we work on finding a cure, but in the mean time, reducing people’s risk of getting Alzheimer’s or dementia.
“In terms of social change, two things are at the forefront. One is that Alzheimer’s is the only cause of death in the top 10 with no cure, treatment, or prevention. That’s why research is such an important part of what we do. And we try to connect people who have been diagnosed with research so they can have a purpose and plan. I had a man ask me once, ‘So, do I just sit and wait to die now?’ Clinical trials bring hope; people know they probably won’t help themselves, but they want to change the state of this disease for future generations.
“The second area of social change is really around the stigma and fear of this disease. Kyle Clark is a local news anchor on the NBC affiliate. He did the most wonderful short video about Alzheimer’s. Basically, he said, Alzheimer’s is one of those diseases it’s still OK to make jokes about. If you forget something, you say, is it Alzheimer’s? His point was why would we say something like that, knowing that someone who hears it might have been affected by the disease. He said let Alzheimer’s cross our lips only with compassion.
“There is still this stigma. So, having people talk about Alzheimer’s honestly and openly can help people deal with it. It’s a huge change I have seen in the last 10 years or so. When I first started in this work, people weren’t talking about it. People weren’t diagnosed early enough, so it was all from someone else’s perspective. So now we push to give people a voice so that it can alleviate some of that fear and stigma.”
2. What keeps you inspired and going when things get tough?
“I joke sometimes and say I can’t wait to be out of a job because I am going to deliver flowers—everyone would be really glad to see me. Our mission keeps me going, the hope I see in families when they know they are not alone. They are not given a roadmap. A lot of people have many months or years of feeling alone, so the hope we can provide is what really keeps me going. And our staff and volunteers keep me going. They are the heart of our organization and inspire me.”
3. What advice would you give to someone who is trying to break new ground in a traditional field?
“Just keep going. I think perseverance really inspires people around you. I’d bring it back to the hope you’re providing to the people who need you to keep fighting.”
“I welcome anyone who wants to be a part of this field—whether it’s around aging or Alzheimer’s—I think we need more people. Know that sticking with it, that alone does inspire the people around you, whether it’s your coworkers or others—keep going.”
4. What book do you recommend to everyone you meet, and why? What book is on your to-read list, and why?
“I have a stack of books by my bed… One on my to-read list a board member gave to me when I got this job. It’s called ‘You are a Badass: How to Stop Doubting Your Greatness and Start Living an Awesome Life.’
“My favorite Alzheimer’s book—I have been doing this for 20 years and have read just about all the books out there—is called ‘A Deeper Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights.’ It was written by a woman here in Colorado. It’s such a good book. When I was at the Alzheimer’s Association in Oregon, we had a conference every year, and the author—Megan Carnarius—was a presenter. She has a fascinating history. She grew up Quaker; The book talks about how the way she was raised was integrated into her view of Alzheimer’s. She became a nurse, then started looking into alternative therapies for people with Alzheimer’s.
“What I love about this book is that it is full of stories. It’s really practical but really insightful. It really kind of gets at the essence of an individual—when they may no longer remember who they are or what is going on around them. It really gets at that soul of who we are.”
5. How have you worked with JVA, and how has that helped your organization?
I am a huge fan of JVA. We have worked with them long term on grant projects; they have been our outside evaluation company; they’re just great partners. When we first worked with them, I realized they were really there to help us think outside the box, with a creative approach but still staying really grounded in best practices. And I have really felt that they are invested in what we do. We often work with people who do what they do because it’s their job, but I’ve never felt that way with JVA. They are really invested. It’s different enough that it stands out.”
6. What else would you want to share with us that we haven’t asked?
“I don’t really consider myself a changemaker. I am doing this work because it’s important to me. But I want to say thank you to all the other changemakers out there. We all play a part in making our communities work. I am thankful there are people out there fighting for kids, or political fights… No one can do it all. But if we each can carry what we can carry, together we have an effect on our community.
“Also, if anyone wants to join our journey, they can contact me at firstname.lastname@example.org. We have 50 staff but over 1,000 volunteers. If people are looking for a way to make a difference in this disease, we welcome them.”
If you want to keep up with the area’s most inspiring changemakers, read JVA’s Changemakers blog!