2020 Virtual Advocacy Leadership Retreat : The Power of Presence

I was full of nerves and excitement a year ago when my son and I traveled to Washington, D.C. to attend an Advocacy Summit. My son decided to become an Arthritis Foundation Junior Ambassador, and to support him I signed up as an Ambassador. I had no idea what to expect, but I was hoping to help my son find his voice. The funny thing was, I found mine.

This year the Arthritis Foundation awarded me the distinction of Platinum Ambassador and I was invited to Washington, D.C for an Advocacy Leadership Retreat. The nerves and excitement returned, but I was ready to head to Capitol Hill to share my arthritis story.  Unfortunately, plans changed due to the coronavirus and a virtual retreat was held instead.

Initially, I was unsure about the virtual retreat because I’d been looking forward to the in-person communication with other advocates and our legislatures. But the staff of the Arthritis Foundation put together a great event. The condensed version of information was incredibly detailed and organized. While not ideal, I personally was thankful to participate.

The Arthritis Foundation is celebrating 20 years of Advocacy and recently released a Mandate for Action. More than 54 million people have arthritis in America, and that number is rising. As Arthritis Foundation Advocates, we must make sure arthritis does not get left behind in discussions of health care.  People with arthritis deserve to be heard, understood and acknowledged. I advocate because people with arthritis should not be ignored or dismissed.

The virtual retreat reinforced the importance of sharing my arthritis story and practicing polite persistance when asking for support from those on Capitol Hill. The pain, isolation and hardships those with arthritis endure must be understood by our lawmakers. As an Advocate, I know I can have an impact on decisions by emailing, calling or meeting with my representatives to share my arthritis story.

The grassroots advocacy program makes advocating rewarding and empowering. I hope together we create a power of presence. let’s make our numbers heard!  A first step: contributing to the Arthritis Foundation’s Story Bank. This is a collection of arthritis stories from those suffering and their caregivers that is used to put a face on arthritis.

It’s essential to make the number one cause of disability in America become a national health priority. Right now, there is a significant gap in the health care of those with arthritis, and those shortcomings must end. Change is needed now!  The Arthritis Foundation coordinates our efforts so Advocates can better work together to reclaim the full lives each of us deserve.

While I would have still preferred getting to see everyone in person, we made the virtual retreat work. Together, one way or another, the Arthritis Foundation Advocates adapt and get things done. In person or virtually, we will create a power of presence in 2020!

Written by Kristine DiDesidero – 2019 Platinum Ambassador from New York

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