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Chondrosarcoma CS Foundation, Inc.

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    Remember the Contributions of David Bowles

    We are just one week away from hosting Chondrosarcoma Awareness Day on February 6 (Shayna’s heavenly 32nd birthday). This is our international effort to educate the public about this rare bone cancer and to build a coalition to support more research and clinical trials. The more attention we create, the more support we generate.

    Show us you care / Join the Fight!
    We ask that you join us by wearing a Yellow Ribbon or a yellow wrist band and post pictures wearing Yellow on social media platforms using the hashtag: #cswecare We also ask that you reach out and educate your family, friends and co-workers about chondrosarcoma, help them understand that we need to bring awareness to fight this deadly bone cancer as we build a strong coalition. Encourage them to join us by simply going to our website to add their name and email address to our petition:
    www.csfshayna.org/support-cs-research

    We also use Chondrosarcoma Awareness Day: February 6, to share stories of our CS family who provide us with inspiration. Each week before February 6, we shared a new story about a member of our community. Some of our members lost their battle with Chondrosarcoma, others are surviving, leading productive lives with the help of surgery, radiation, orphan medications and clinical trials. Our first dedication was Parker Jeffrey Morgan who at the young age of 21 with his whole life ahead of him lost his battle with Conventional Chondrosarcoma Grade 3. We introduced Amber Sarcone, a young special education teacher and a guidance counselor at a Charter School in Philadelphia and a Super Fan of the Philadelphia Eagles. Amber has conventional chondrosarcoma which evolved from Osteochondroma which she had before her second birthday. We paid tribute to Julie Mathews, the ultimate champion, warrior and fighter. Despite what ever obstacles are in front of her, Julie does everything she can possibly do to confront and win those battles. She is without a doubt a pioneer who is leading the way for patients with Extra-skeletal MyxoidChondrosarcoma by enrolling and getting treatment in the Phase 1: Non-conventional INBRX 109 clinical trial. Julie is an inspiration in how to persevere, keep fighting and never give up. Last week, we paid tribute to our Patron Pioneer and Warrior: Mike Snyder. Mike has been fighting chondrosarcoma for over 26 years. Even as a child Mike fought multiple enchondromatosis. Mike’s journey with chondrosarcoma is nothing less than inspirational. He has participated in several clinical trials but the most recent with INBRX has resulted in being stable and a significant reduction in pain.

    One common thread among all of our tributes is their love of life, adventurous spirit and their strong will to keep fighting. This is no exception for the last tribute we will make before Chondrosarcoma Awareness Day. David Bowles, Ph.D. lived life his way. He had homes in Bavaria Germany and in San Diego, CA. and with his wife Janice, they loved to travel, ski and go on many adventures together. When David was first comfronted with Conventional Chondrosarcoma, David decided he did not want to have surgery and started his care with proton radiation and because he had the IDH1 biomarker started taking the medicatrion Tibsovo. This helped him live a normal life for five years until last year, when he had a recurrence in his pelvis and had to undergo surgery. Unfortunately cancer cells got into his blood stream and spread and in September, 2022 he quietly passed away.

    David was trained as an Occupational Psychologist and wanted to convey to the CS community that we should live life to the fullest and conquer the stress, pain and anxiety related to this disorder. David left us with two gifts. He made a presentation entitled Using Psychology to help: Virtual Dialogue 3 videos – Chondrosarcoma CS Foundation, Inc. | Chondrosarcoma CS Foundation, Inc. (csfshayna.org) David also helped the CS foundation establish our mission by talking to other foundations representing rare diseases and connecting us with NORD: National Organization for Rare Diseases. If it was not for David taking the initiative, we would not be about to launch The Chondrosarcoma Patient Registry under the NORD IAMRARE Platform.

    We will always be grateful to David for his contributions and support. Please take a few minutes to read our tribute honoring David Bowles.