Recap of “Bringing Together Stroke Support Organizations in the US”

On Friday, April 17th, I had the distinct honor and pleasure of attending a meeting entitled “Bringing Together Stroke Support Organizations in the US” at Adelphi University in Garden City, New York. 

Stroke Awareness Vermont has been in existence since October of 2023, but we are a small organization. We have big dreams, but both Hannah and I have other full-time jobs which limit how much time we can give to growing SAVt. Yet, somehow, I was invited to be one of twelve US Stroke Support Organizations (SSOs) to participate in this meeting! And it was absolutely wonderful!

The meeting was organized by a committee led by Dr. Hariklia Proios and Dr. Kalliopi Tsakpounidou. Both of these women are highly accomplished in their fields, with Dr. Proios serving as president of SAFE (Stroke Alliance For Europe). SAFE is a large umbrella organization that smaller SSOs belong to in Europe, and Dr. Proios hopes that eventually a similar type of organization can be established in the United States. This meeting was the first step toward that goal.

Prior to meeting in person, we had two Zoom meetings for the team to collect some information from all of the SSOs. All the while, I kept thinking to myself, “how did I get here? And what do I, a teacher from Vermont, have to contribute to these discussions?” So I was a bit intimidated walking into the room on Friday. 

The moment I started meeting people, all of my worries disappeared. I recognized people from our Zoom meetings, and the conversations just took off. The morning was filled with presentations from various stakeholders including Dr. Craig Anderson who is the President-Elect of the World Stroke Organization and Dr. Mitchell Elkind, Chief Science Officer for Brain Health and Stroke of the American Stroke Association. I was thrilled to learn that ASA is finally making the move to using the acronym BE FAST to identify the signs of a stroke. This has been a gripe of mine for years because in Trent’s case, the signs manifested themselves in his struggle with balance. FINALLY, ASA! 

In the afternoon, we were divided into groups for additional discussion and information gathering. My group consisted of Maddi from Fast FWD (also on Instagram as Maddi’s Stroke of Luck), Liz from Stroke Onward, Kirsten and Liz from Stroke Inspire in Minnesota, and Marret, a Stroke Navigator from Stonybrook Neurosciences Institute in NY. I had the chance to share about my personal experiences and challenges of caregiving as well as share insights from my stroke caregiver support group. I may not be a medical provider or researcher or therapist, but while that is their career and they excel at it, I am living my experience every single day. It is my life. And I was warmly acknowledged and appreciated for the good that I have tried to create from this life-changing event that occurred with my husband’s first stroke in 2018. 

As the day drew to an end, they presented a quick summary of the discussions that were happening in each group. There were so many commonalities with all of the amazing programs and ideas that each of the SSOs spoke about. And of course, the biggest commonality is the challenge of finding enough funding to continue doing what they do and try to grow. 

There were so many wonderful SSOs there, and so many more that were not included in this event. It is heart-warming to see the commitment each of these individuals has to stroke survivors and caregivers, and I hope it is only the beginning of the connections and collaborations made that day. 

One amazing thing that made it possible for me to attend the event was the sponsorship of Bristol Myers Squibb/Johnson & Johnson and Bayer. Because of their support, all travel and accommodations were covered! Since SAVt is so small, we wouldn’t have the financial means to attend something like this. So I am very grateful to the sponsors, and I had the chance to meet representatives from both companies and thank them for their support. 

There have been many times over the last 7.5 years since the first stroke that life has felt overwhelming and unfair. Being included in this meeting validated everything we’ve been through and was another step in reclaiming the hardships, loss, and emotions as something that can be used for good. To help other people who are in the same position. To connect with other SSOs so we can create positive change and build stronger systems to support survivors and their caregivers. 

What a privilege to continue this work, knowing there are so many others who are doing it in their communities. Thank you to everyone who made this meeting possible!!