Steffens Scleroderma Foundation

Steffens Scleroderma Foundation www.steffens-scleroderma.org The Steffens Scleroderma Foundation was formed in memory of Ann Steffens who was diagnosed with scleroderma in 1984 and passed away in 1997.

Ann's nature was to help others, and she participated in several research studies throughout her life. Her mother Helen Polenz donated the funds to create the research center in the hope of sparing others the pain of losing a loved one to this disease.

Operating as usual

Enjoy our August 2021 Newsletter!It is full of information regarding...Expanding Medical Advisory BoardDr. Lesley A. Sak...
08/05/2021

Enjoy our August 2021 Newsletter!
It is full of information regarding...
Expanding Medical Advisory Board
Dr. Lesley A. Saketkoo
Dr. Tracy M. Frech
Dr. John Patrick Whelan
Stephen Veit
Welcome Steve Rosenblum
Cruise for a Real Cure July 17, 2021
Steffens Presents at National Conference
Two New Board Members
Annual Fall Event, October 23, 2021
https://www.steffens-scleroderma.org/application/files/8716/2812/7199/August_2021_Newsletter.pdf

Enjoy our August 2021 Newsletter!
It is full of information regarding...
Expanding Medical Advisory Board
Dr. Lesley A. Saketkoo
Dr. Tracy M. Frech
Dr. John Patrick Whelan
Stephen Veit
Welcome Steve Rosenblum
Cruise for a Real Cure July 17, 2021
Steffens Presents at National Conference
Two New Board Members
Annual Fall Event, October 23, 2021
https://www.steffens-scleroderma.org/application/files/8716/2812/7199/August_2021_Newsletter.pdf

07/18/2021

We did our sun dance and we had a great cruise. Thanks to all who came out and played with us!!!!!!!!

07/16/2021

Just a short note, the cruise is Rain or Shine. There is plenty of seating indoors if it does rain!!!!

It would help if you all did your Sun Dance!!!!

07/12/2021

Carla J. Gage

07/12/2021

Just a BIG REMINDER. We board the Dutch Apple Saturday at 3:00 PM!! Don’t be late! Just a few tickets left if you still want to go. Purchase directly on the Dutch Apple Cruises website!!!

The Steffens Scleroderma Foundations would like to extend our ongoing appreciation of the interest in our past education...
07/10/2021

The Steffens Scleroderma Foundations would like to extend our ongoing appreciation of the interest in our past education events. Several of my dietetic interns (now graduates) from Russell Sage College put together various recipes for participants in lieu of the nutrition table that we were able to have during our in-person events. Here is one of the recipes. Additional recipes are located on our website: https://www.steffens-scleroderma.org/education/interprofessional-education
Thank you again for your ongoing support and participation in sharing your experiences with future healthcare professionals. Please email me directly if you would like to be involved in our next IPE event (date TBD).
Michelle Morgan, MS, RDN, CDN
Secretary, Executive Committee Member
[email protected]

The Steffens Scleroderma Foundations would like to extend our ongoing appreciation of the interest in our past education events. Several of my dietetic interns (now graduates) from Russell Sage College put together various recipes for participants in lieu of the nutrition table that we were able to have during our in-person events. Here is one of the recipes. Additional recipes are located on our website: https://www.steffens-scleroderma.org/education/interprofessional-education
Thank you again for your ongoing support and participation in sharing your experiences with future healthcare professionals. Please email me directly if you would like to be involved in our next IPE event (date TBD).
Michelle Morgan, MS, RDN, CDN
Secretary, Executive Committee Member
[email protected]

Only 1 Week Away until our Cruise for a Cure.  GET YOUR TICKETS NOW!!
07/09/2021

Only 1 Week Away until our Cruise for a Cure. GET YOUR TICKETS NOW!!

Only 1 Week Away until our Cruise for a Cure. GET YOUR TICKETS NOW!!

Happy July!!!  Enjoy an exciting cruise on the Hudson River for a great cause. Get your cruise tickets NOW!  Limited sea...
07/01/2021

Happy July!!! Enjoy an exciting cruise on the Hudson River for a great cause. Get your cruise tickets NOW! Limited seating.

Happy July!!! Enjoy an exciting cruise on the Hudson River for a great cause. Get your cruise tickets NOW! Limited seating.

Join us for our Annual Scleroderma Cruise for a Cure! Tickets are $40 person and include food from DeMarco's Restaurant!...
06/19/2021

Join us for our Annual Scleroderma Cruise for a Cure! Tickets are $40 person and include food from DeMarco's Restaurant! All ticket proceeds will go directly to the Steffens Scleroderma Center.

Cruise Departs at 330p - Returns 530p.

Full bar is available with drinks for purchase (cash & credit accepted).

Space is very limited for this event, advanced registration is recommended. Cruise is rain or shine event. There are no ticket refunds.

*Please note that processing fees will be added to your ticket at check out.*

Menu by DeMarco's

Crudités
Caesar Salad
Mac & Cheese
Sausage & Meatballs
Chocolate Chunk Cookies

https://tickets.dutchapplecruises.com/#/event-details/scleroderma-cruise-for-a-cure

Join us for our Annual Scleroderma Cruise for a Cure! Tickets are $40 person and include food from DeMarco's Restaurant! All ticket proceeds will go directly to the Steffens Scleroderma Center.

Cruise Departs at 330p - Returns 530p.

Full bar is available with drinks for purchase (cash & credit accepted).

Space is very limited for this event, advanced registration is recommended. Cruise is rain or shine event. There are no ticket refunds.

*Please note that processing fees will be added to your ticket at check out.*

Menu by DeMarco's

Crudités
Caesar Salad
Mac & Cheese
Sausage & Meatballs
Chocolate Chunk Cookies

https://tickets.dutchapplecruises.com/#/event-details/scleroderma-cruise-for-a-cure

Don't miss out on all the fun of Mardi Gras in July.  We will have raffles and auction items available.  Tickets are sti...
06/14/2021

Don't miss out on all the fun of Mardi Gras in July. We will have raffles and auction items available. Tickets are still available for the Cruise for a Real Cure. But don't wait, seating is limited.
https://tickets.dutchapplecruises.com/#/event-details/scleroderma-cruise-for-a-cure

Don't miss out on all the fun of Mardi Gras in July. We will have raffles and auction items available. Tickets are still available for the Cruise for a Real Cure. But don't wait, seating is limited.
https://tickets.dutchapplecruises.com/#/event-details/scleroderma-cruise-for-a-cure

All those that ordered from our Flower Power Fundraiser.  Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
05/17/2021

All those that ordered from our Flower Power Fundraiser.
Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

All those that ordered from our Flower Power Fundraiser.
Thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Timeline Photos
05/13/2021

Timeline Photos

📣Step Up & Speak Out for Scleroderma📣

Don't pass an opportunity up. Listen to this recent podcast on WYSL 1040am where Marilyn Sibley, Greater Rochester Support Group Leader was able to speak about scleroderma. https://podcasts.warpradio.com/Healthtalk/podcast.xml

May 2021 Newsletter is full of great information about our Interprofessional Education Conference, updates regarding on ...
05/12/2021

May 2021 Newsletter is full of great information about our Interprofessional Education Conference, updates regarding on going projects and a spotlight on our Board Member, Theresa Slayton, as well as information about our upcoming Cruise in July and much more.
https://www.steffens-scleroderma.org/application/files/9516/2084/1590/Newsletter_May_2021_FINAL.pdf

May 2021 Newsletter is full of great information about our Interprofessional Education Conference, updates regarding on going projects and a spotlight on our Board Member, Theresa Slayton, as well as information about our upcoming Cruise in July and much more.
https://www.steffens-scleroderma.org/application/files/9516/2084/1590/Newsletter_May_2021_FINAL.pdf

SAVE THE DATE!  July 17, 2021 Cruise for a Real Cure aboard the Dutch Apple!
05/12/2021

SAVE THE DATE! July 17, 2021 Cruise for a Real Cure aboard the Dutch Apple!

SAVE THE DATE! July 17, 2021 Cruise for a Real Cure aboard the Dutch Apple!

05/06/2021

Happy Spring to you all!

Mark your calendars and hold the date for July 17th at 3:30 pm. We will be having our annual Cruise for a Real Cure onboard the Dutch Apple! More info to come shortly. Tickets can be purchased through the Dutch Apple website.

Be safe and take care!

On March 24th, we held the 4th Annual IPE Conference completely virtual.  We had over 200 participants which included he...
04/19/2021

On March 24th, we held the 4th Annual IPE Conference completely virtual. We had over 200 participants which included health care professionals and students, and people with Scleroderma and caregivers. It was a Huge success. More information to come in our next Newsletter. Attached is a Thank you to all who participated from our Vice President, Linda Meenan.

On March 24th, we held the 4th Annual IPE Conference completely virtual. We had over 200 participants which included health care professionals and students, and people with Scleroderma and caregivers. It was a Huge success. More information to come in our next Newsletter. Attached is a Thank you to all who participated from our Vice President, Linda Meenan.

03/30/2021

#BREAKING: Starting Tuesday, April 6 at 8am, all New Yorkers age 16+ will be eligible to schedule and receive the COVID-19 vaccines. And beginning tomorrow at 8am, all New Yorkers age 30+ will be eligible to schedule and receive the vaccines. #VaccinateNY
https://am-i-eligible.covid19vaccine.health.ny.gov/

Address

P.O. Box 38037
Albany, NY
12203

General information

Foundation in support of Scleroderma and Degos Disease Research and Education

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