New York City
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Meetings offer education, encouragement, emotional support, and allow for open discussion about managing and living with spondyloarthritis.

Upcoming Meeting(s)

Virtual meeting, using Zoom:

Sunday, March 24, 2024
6:00 PM – 7:30 PM EST

Location: virtual meeting, using Zoom!

Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/tZwod-uhrzIoGt1aEyE4jvj-V8nP9pAn99GJ 

After registering, you will receive a confirmation email containing information about joining the meeting.

If you have any questions, please contact support group leader, Charlotte Zeman via email at LongIslandSAA@gmail.com

Social Media

Join our social media channels:

Facebook: @spondylitis 

Twitter: @spondylitis 

Instagram: @spondylitis 

YouTube: Spondylitis

LinkedIn: Spondylitis Association of America

Regular Meeting Location

The New York City group meets once per month. Because of the COVID-19 pandemic, the group has primarily been meeting virtually on Zoom. If weather permits and if COVID-19 cases have fallen, the group occasionally meets for an outdoor, in-person meetup. We plan to eventually try a hybrid meeting format so that group members can join both in person and via Zoom.

If you have any questions, please contact support group leader, Charlotte Zeman via email at LongIslandSAA@gmail.com

Topic: Roundtable Discussion

Leadership

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Diana Castaldini

New York City's Support Group Leader

Diana Castaldini

I was diagnosed with ankylosing spondylitis in 2014 at the age of 26. Luckily, the diagnosis came quickly after presenting with severe lower back pain, but I’d suffered with intermittent back pain and fatigue for years that I mistakenly attributed to stress. I am positive for the HLA B27 gene, and after some investigation, I discovered that my mother is also positive for the gene and went undiagnosed with spondylitis for most of her life. 

I have pursued both conventional treatment and lifestyle changes to manage my spondylitis and these efforts have shaped my character for the better in many ways. Over the course of almost ten years, I have learned to better manage the disease as well as its mental and emotional toll. Meeting other patients has made a huge positive difference in my ability to cope with spondylitis. 

I intimately understand all aspects of living with the disease, from the diagnostic process to navigating medical care and insurance to dealing with the widespread lack of awareness about spondylitis. I stay abreast of developing research in the field and am encouraged by the fact that there have been several new treatments developed in the years since I was diagnosed. 

I believe that a sense of community makes the difference between thriving with an illness and suffering in isolation. In fact, it is one of the major, well-documented social determinants of health. It gives me joy and a sense of purpose to be able to facilitate that connection for others and participate in it myself.

In my free time, I enjoy cooking healthy, nourishing meals, trying new recipes, spending time with my loved ones, reading, and writing.

About NYC Support Group

At our meetings, we hope to offer members a place to meet others with spondylitis, learn about resources, treatments, and strategies for managing the condition, and receive support with their challenges. We also welcome family members, friends, and significant others of people with spondylitis, who would like to learn more about how to support their loved ones.

Group Guidelines

If this is your first time joining us, welcome! We are excited to have you. To make sure that all meetings are a supportive, safe space for all, we’ve put together some group guidelines. Check it out!

1. Confidentiality. What is said in the group stays in the group. You can share general information with others outside the group, but please don’t use names or identifying information of members.
2. Respect. Treat other group members with respect and understanding
3. Remember that everyone’s experience is different, and what worked for you might not work for someone else. As we say in social work, everyone is an expert on their own life!
4. Give everyone a chance to speak. Try not to monopolize the discussion!
5. Ask a doctor. Remember that most of us (group leaders included) are not doctors, so be careful about giving or taking medical advice.

Want to Start a New Support Group?

We’d love to have you join our team of passionate volunteers leading our spondylitis educational support groups! Learn more about how to get started here, and reach out to manny.caro@spondylitis.org