National Scleroderma Foundation Tri-State Chapter

11/02/2025

UPDATE: Many in our community quickly identified that the original post was not clear. Our intention was to highlight the importance of early diagnosis, but we were not clear on distinctions between diffuse and limited SSc.

Every journey with scleroderma is unique, but getting a quick diagnosis can be critical.

For people living with Diffuse Systemic Sclerosis, many serious complications can present themselves in the first five years.

While this timeline can be different for each individual, the most important thing is to get regular check-ups with your care team and monitor symptom development!

Learn more at https://scleroderma.org/resources-center/

11/02/2025

November is Pulmonary Hypertension Awareness Month!

Pulmonary arterial hypertension (PAH) is a serious condition that affects the blood vessels in the lungs - and people living with scleroderma are at increased risk, with 8–12% developing PAH.

This month, we’re proud to join the Pulmonary Hypertension Association to and raise awareness about the importance of early detection and care for PAH in scleroderma. 💙

Learn more from Pulmonary Hypertension Association

11/02/2025

11/02/2025

A brighter future for the scleroderma community is on the horizon. 💙

Our team gathered with leaders in autoimmune disease research and returned with inspiring updates on how researchers, clinicians, and advocates are joining forces to create a future with better treatments and brighter possibilities.

This growing momentum reminds us that progress is possible when the community, science, and advocacy come together.

Read more: https://ow.ly/5qR450XjTRe

10/31/2025

⭐️TRI-STATE IN PERSON EDUCATION FORUM AT THE HOSPITAL FOR SPECIAL SURGERY IS BACK THIS FALL⭐️and THERE IS STILL TIME TO REGISTER⭐️

This Educational Forum’s is on Saturday, November 22, 2025 at 11:00 am and the topic will be Let’s Talk Scleroderma Research with Scleroderma experts! The experts speaking are Dr. Robert Spiera, Dr. Elena Bernstein, Dr. Kimberly Larkin and Dr. Monique Hinchcliff.

This is a MUST attend and we hope to see you! It is the perfect opportunity to learn and meet other members of the community!

Registration begins at 10:30 am or register in advance using the QR code or at https://host.nxt.blackbaud.com/registration-form/?formId=be338672-fd76-4e12-8632-93add9aa31ad&envId=p-JWRarjDScUO0zGLKk5a83g&zone=usa

✨⭐️Anyone who registers in advance, will get an extra raffle ticket for the door prize!✨⭐️

National Scleroderma Foundation

10/28/2025

Big things are on the horizon for The Voice! 💙

The stories you love and the voices that strengthen our community are about to get even easier to connect with and share.

Stay tuned… something new is coming next week!

10/28/2025

Orange County Meeting has been cancelled for today! Next meeting is 11/25!

10/28/2025

Orange County Meeting has been cancelled for today! Next meeting is 11/25!

⭐️Friendly Reminder⭐️

The Orange County Support Group encourages you to attend their next IN PERSON meeting TOMORROW at their NEW location!

When: Tuesday, October 28, 2025 @ 1:00 PM EST

Where: Josephine-Louise Public Library, 5 Scofield Street, Walden, NY (Walden's Municipal Building and the community room is on the second floor)

Topic: Open Discussion

We hope many of our local people can join us on that day!

For more information or to join the group, contact the Support Group Facilitator, Jodi Lynn at jo.lynn78@gmail.com

10/27/2025

Members of the Orange County Support group will be participating at the Walden Fire Department's Vendor and Craft Fair on December 7, 2025 from noon to 4:00 pm where we will have a Mission table with awareness materials. It is an indoor event and we already have a few raffle items ready for your chance to win! Come and join us, and even start your Holiday shopping early!

If you live in the area, we are in need of volunteers (any time you can spare) would be appreciated.

For more info, contact Jodi Lynn, Orange County Support Goup Facilitator at Jo.lynn78@gmail.com

10/27/2025

⭐️Friendly Reminder⭐️

The Orange County Support Group encourages you to attend their next IN PERSON meeting TOMORROW at their NEW location!

When: Tuesday, October 28, 2025 @ 1:00 PM EST

Where: Josephine-Louise Public Library, 5 Scofield Street, Walden, NY (Walden's Municipal Building and the community room is on the second floor)

Topic: Open Discussion

We hope many of our local people can join us on that day!

For more information or to join the group, contact the Support Group Facilitator, Jodi Lynn at jo.lynn78@gmail.com

10/27/2025

Members of the Metro 5 and Orange County Support Groups participated at A Rare Day at the Bronx Zoo on October 4th with National Organization of Rare Disorders sharing our experiences with Rare Disease! It was a great morning raising awareness for Scleroderma with fellow Scleroderma Warriors and friends in Tri-State! Thank you for being part of the event!

10/27/2025

There’s still time to register! Join us for the first in person education forum at HSS since COVID!

⭐️TRI-STATE IN PERSON EDUCATION FORUM AT THE HOSPITAL FOR SPECIAL SURGERY IS BACK THIS FALL⭐️and THERE IS STILL TIME TO REGISTER⭐️

This Educational Forum’s is on Saturday, November 22, 2025 at 11:00 am and the topic will be Let’s Talk Scleroderma Research with Scleroderma experts! The experts speaking are Dr. Robert Spiera, Dr. Elena Bernstein, Dr. Kimberly Larkin and Dr. Monique Hinchcliff.

This is a MUST attend and we hope to see you! It is the perfect opportunity to learn and meet other members of the community!

Registration begins at 10:30 am or register in advance using the QR code or at https://host.nxt.blackbaud.com/registration-form/?formId=be338672-fd76-4e12-8632-93add9aa31ad&envId=p-JWRarjDScUO0zGLKk5a83g&zone=usa

✨⭐️Anyone who registers in advance, will get an extra raffle ticket for the door prize!✨⭐️

National Scleroderma Foundation