Chondrosarcoma Foundation

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Chondrosarcoma Foundation The Chondrosarcoma Foundation was created to improve the lives of those living with this rare disease

Chondrosarcoma Awareness DayFriday, February 6, 2026, One week from today.Show Your Support for Chondrosarcoma Research ...
02/02/2026

Chondrosarcoma Awareness Day

Friday, February 6, 2026, One week from today.

Show Your Support for Chondrosarcoma Research and Clinical Trials

https://csfshayna.org/support-cs-research/

Wear something yellow (Ribbon, Wrist Band)

Every February 6, the Chondrosarcoma Foundation initiates Chondrosarcoma Awareness Day to bring awareness to Chondrosarcoma and honor the legacy of Shayna Elise Kramer who passed away from this rare cancer in November 2019. This February 6, 2026, will be her 35th heavenly birthday. It was Shayna’s wish to educate the public about Chondrosarcoma and support patients and their families suffering from this ultra rare bone cancer.

Join us on October 5th at Buddy Atticus Park in Greenbelt, MD. There is no cost to attend, but donations are welcome & c...
01/10/2025

Join us on October 5th at Buddy Atticus Park in Greenbelt, MD. There is no cost to attend, but donations are welcome & can be made at csfshayna.org🎗️

Mike Snyder A Loss of A Fighter, A Warrior, An InspirationIt is with a broken heart that I report to you the passing of ...
01/05/2025

Mike Snyder A Loss of A Fighter, A Warrior, An Inspiration
It is with a broken heart that I report to you the passing of my dear friend and founding foundation board member: Mike Snyder. In his case it was not chondrosarcoma that took his life but he passed away from a second heart attack this past Saturday, April 26.

Mike has contributed articles, commentaries (see link below) helping guides, participated in board meetings and patient advisory meetings and shared his patient journey to help CS patients navigate through the medical system, helped patients struggling with chondrosarcoma and helped pharmaceutical companies improve their clinical trials. Mike wrote a book entitled: No Treatment Options Left: Fighting and Surviving Inoperable Cancer, that chronicles in detail his journey with Chondrosarcoma (available on Amazon). Mike has struggled with chondrosarcoma for the past 19 years, starting with a leg amputation. He attributed staying alive for the past 11 years from his participation in clinical trials (Tibsovo and INBRX 109). He fought hard to make positive changes for all CS Warriors and has made a difference and will continue to do so. Mike Snyder is my hero. He has been a trusted friend, a mentor, and a pioneer.

https://csfshayna.org/navigating-care-and-treatment-of-chondrosarcoma/

Quoting Mike: “Having a rare cancer shouldn’t mean a patient has to settle for limited treatment options. Being a part of the Chondrosarcoma Foundation has provided me with a way to give back to research and funding to ensure other chondrosarcoma patients are given the same opportunity I’ve had to find an effective drug. Effective treatment means a chance to live life on your terms, not cancer’s. “

Hope you can make It! Sunday April 13th at 1:00. Tickets can be purchased with the QR code.
03/04/2025

Hope you can make It! Sunday April 13th at 1:00. Tickets can be purchased with the QR code.

We are excited to announce that we’ve received IRB approval to launch a set of new surveys for patients and caregivers w...
12/03/2025

We are excited to announce that we’ve received IRB approval to launch a set of new surveys for patients and caregivers who completed the first set of surveys since our initial launch in March 2023. This second set of surveys examines results from our first analysis completed last June that needed further investigation as well as other questions and subjects that were not addressed in our first analysis of the Chondrosarcoma Patient Registry.

Participants who completed the first 8 surveys in the registry have been asked to go back to the Patient Registry and complete the follow-up surveys. It takes only an hour, but it will provide more of an in-depth and comprehensive analysis of the patient journey with chondrosarcoma.

We invite and encourage all chondrosarcoma patients and caregivers to go to https://chondrosarcoma.iamrare.org and complete the first set of surveys in the chondrosarcoma patient registry. Once you complete the first set, you will be notified 3 months later to complete the follow-up surveys.

We are reaching out to Sarcoma Specialists, Patient Advocacy Organizations, Medical Institutions, Patients, Family Members and Caregivers across the globe to inform them about the Chondrosarcoma Patient Registry and encourage anyone with a diagnosis of chondrosarcoma to register.

To access the Chondrosarcoma Patient Registry and for more information, visit: https://chondrosarcoma.iamrare.org 🎗️

We are just a few hours away from CS Awareness Day, February 6th, and we encourage you all to get involved by wearing ye...
06/02/2025

We are just a few hours away from CS Awareness Day, February 6th, and we encourage you all to get involved by wearing yellow and positing a picture to your social media with the hashtag

Until then, we will honor Jamie Elliott who has had an incredible life from being a stewardess, to a Hollywood stunt woman working in blockbuster movies. Jamie has had an action-packed, adventurous life and nothing seems to get her down. Even with Chondrosarcoma and ending up in a wheel chair Jamie discover pickleball and she is not only good at it; she is a champion as well as an ambassador to other wheelchair bound athletes. Her philosophy is to keep moving and not let anything keep you down.

Jamie’s inspirational journey as well as the other tributes we have shared are the best way to kick-off Chondrosarcoma Awareness Day. Please take a few minutes to read about Jamie’s incredible journey and please share her story with others.

Leading up to Chondrosarcoma Awareness Day: February 6th, we have shared inspirational stories of CS Warriors.Please rea...
05/02/2025

Leading up to Chondrosarcoma Awareness Day: February 6th, we have shared inspirational stories of CS Warriors.

Please read Parker’s story above, who at the young age of 21 with his whole life ahead of him lost his battle with Conventional Chondrosarcoma Grade 3. We are honored to share his story, and others, as we prepare to recognize Chondrosarcoma Awareness Day tomorrow.

To participate, wear the color yellow and post a photo to your social media using the hashtag 🎗️

Tomorrow, February 6th, is CS Awareness Day! Don’t forget to wear your yellow and post to social media with the hashtag ...
05/02/2025

Tomorrow, February 6th, is CS Awareness Day! Don’t forget to wear your yellow and post to social media with the hashtag to show your support! 🎗️

Today we honor Ken Pilarski, affectionately called “The Concrete Man.” He was strong, hard working down to earth, loved the outdoors, caring and generous. Ken lost his battle with Conventional Chondrosarcoma this past November about 3 months ago.

Please take a few minutes to read about Ken, the “concrete man” and please share his story with others.

Chondrosarcoma Awareness Day is on Thursday, February 6th! This week, we pay tribute to Nicole Stickel. At the young age...
04/02/2025

Chondrosarcoma Awareness Day is on Thursday, February 6th!

This week, we pay tribute to Nicole Stickel. At the young age twenty eight, she is currently on active duty in the Air Force and works as a radiology technician. Nicole is diagnosed with Extraskeletal Myxiod Chondrosarcoma that was found in her right ankle. Nicole shares how she has finds inspiration and purpose competing in the Wounded Warrior program by participating and winning in adaptive sporting events.

Please take a few minutes to read our Nicole’s inspirational story and share these stories with others.

Chondrosarcoma Awareness Day is hosted annually on February 6. To show your support, here is all we ask: Join us by wear...
27/01/2025

Chondrosarcoma Awareness Day is hosted annually on February 6. To show your support, here is all we ask:

Join us by wearing something Yellow on February 6
Post pictures wearing Yellow on our social media platforms with the hashtag:

This week we honor Roger Petersen, a devoted family man, a jeweler who also had a passion for comics and combined his vocation and avocation. He was honored on the cover of the his local magazine as a “Shining” example. Roger passed away in June 2023 from Dedifferentiated Chondrosarcoma.

Please take a few minutes to read Roger’s shining story and please share his story with others.

Chondrosarcoma Awareness Day is hosted annually on February 6. It will mark Shayna Kramer’s heavenly 34th birthday. We i...
20/01/2025

Chondrosarcoma Awareness Day is hosted annually on February 6. It will mark Shayna Kramer’s heavenly 34th birthday. We invite all to Join the Fight. The more attention we create, the more support we generate.

Here is all we ask:
• Wear something Yellow on February 6
• Post pictures wearing yellow using the hashtag:

This week we pay tribute to Rachel Moss who lost her battle to conventional chondrosarcoma this past August at the young age of 44. I personally remember Rachel who unselfishly sent research articles in the effort to inform our community and advance chondrosarcoma research and clinical trials. On several occasions I would forward her e-mails to our medical board to make sure they also read the latest research.

Please take a few minutes to read Rachel’s inspirational story and share her story with others.

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