The New York City Support Group

Upcoming Meeting(s)

Casual Meetup: Healthy late lunch at Field Trip in Harlem, with optional pilates class beforehand!

Saturday, August 24, 2019

Pilates 12:15-1:30, lunch 2:00-3:00

I've been going to pilates for a few years at the suggestion of my rheumatologist, and I love the classes at Harlem Yoga Studio. For those who are interested and able, come join me at the Saturday class, and then we can walk to Field Trip (12 min away) for a healthy lunch! Feel free to join either or both activities.

Important info: Classes at HYS fill up, so if you want to join, I suggest that you register with the studio and sign up for the class online beforehand, and arrive 10-15 minutes early (the class is at 12:30).


Next Meeting:

Tuesday, September 10, 2019

6:30-8:00 pm

Topic: Roundtable Discussion

*RSVP via this form with your information as they appear on your ID, at least 48 hours prior to our meeting, per building security. 

 

Meeting Location

Meeting Location:

Alfred P. Sloan Foundation

630 Fifth Avenue, Suite 2200

(45 Rockefeller Plaza)

New York, NY 10112

Meeting Schedule

We host support group meetings every other month, generally on Tuesday evenings, with the format being a round table discussion. In the months in between our formal meetings, we also have informal social gatherings at coffee shops, bars, etc, usually on weekends or Friday evenings.

Group Co-leaders

Sandra & Alissa

SAAofNYC@gmail.com

 

About New York City's Support Group Co-Leaders

Sandra

Hi! I’m Sandra. I was diagnosed with spondylitis in September 2015, after having symptoms for about a year. I started going to the group in January 2017, and I found it so helpful to meet others who understood what I was going through. I joined Ariana as co-leader in August 2017 so I could help give back the support I received when I first joined. I’m also a clinical social worker, and I enjoy facilitating groups. Fun fact: I ride my bike all over the city and find that this really helps my back pain! 

Alissa

After a childhood, adolescence, and young adulthood filled with sports and physical activity, I was suddenly stopped in my tracks with a SAPHO syndrome diagnosis in the summer of 2014.  I found little comfort in the diagnosis and just wanted to know when ‘it’ would go away.  When would I be able to run again?  What day will I wake up feeling fine and ready to go?  When will the medications finally work and fix this problem? This journey has left me with many more questions than answers.  It felt like so many things were taken away from me instantly, and with no recovery in sight.

Transitioning through this diagnosis and condition has forced me to accept the unknown, and taught me how to regulate and pace my life differently.  Over time I’ve come to better terms living with this condition, though not without kicking and screaming. I’m finally coming around to implementing a sustainable and fulfilling lifestyle. I’m fortunate to have an effective and compassionate rheumatologist I’ve been seeing since the onset and who has been very supportive in my search for stability, but my improved future is in part attributable to my involvement in the NYC SAA support group.  Just meeting others with similar circumstances has been life-changing. As one of the leaders, I hope to contribute in a meaningful way to the NYC group and help others discover glimmers of normalcy I once found impossible to envision. Today I manage my condition through diet, exercise, mental hygiene, and leaning on my supports.



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 programs@spondylitis.org

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Careers

Visit our careers page for available positions

Contact Us

Spondylitis Association of America

16360 Roscoe Blvd.  Ste. 100
Van Nuys, CA 91406

Email

info@spondylitis.org

Information Requests

(800) 777-8189 U.S. only
or (818) 892-1616
*Please note: This is not a Crisis Hotline. If you are in a life-threatening crisis, please dial 911 for immediate help in the US. Please follow this link for crisis intervention resources.

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