Holiday Wishes and New Year Resolutions
I would like to wish everyone the best for this holiday season. May you all cherish the moments you have with your family and blessings to you all for a Healthy and Happy New Year. I thank each and every one of you for the caring and support you have shown each other this past year. The sharing of your experiences and the knowledge gained you share through the Facebook support groups is meaningful and very helpful and for those looking for answer it is invaluable..
My New Year’s Resolution and promise to you is that I will keep fighting for the cause and through our collective efforts, I hope we will find answers to our questions, solutions to our problems, effective treatments that work and ultimately a cure for this horrible rare cancer. This past year we have taken some steps in the right direction with the Tibsovo and INBRX 109 clinical trials. I would also like to do what ever I can to make your journey’s into clinical trials less stress by advocating for remote locations closer to where you live; to focus on the aggressive sub-types of chondrosarcoma including de-differentiated, extra-skeletal myoxid and mesenchymal chondrosarcoma.
In 2023 the Chondrosarcoma Foundation will host Chondrosarcoma Awareness Day on February 6 (Shayna’s heavenly 32nd birthday). We ask that you join us in wearing a Yellow Ribbon or the yellow wrist band and post pictures wearing Yellow on social media platforms at #cswecare 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. Please get your family and friends to sign on to our petition:
We will host our fifth Virtual Dialogue (April, 2023) and highlight the latest research trends and medical updates and address orthopedic surgical techniques to treat chondrosarcoma. We will invite you to join us once we establish the date.
Finally, we have been successful in building the Chondrosarcoma Patient Registry through the NORD. We will soon become the 44th Foundation to join their IAMRARE Patient Registry Platform and the first to kick-off their upgraded 2.0 platform. We are very optimistic that by Mid-January we will submit the Patient Registry package to the IRB: Internal Review Board for their approval and launch the registry by February. This will be a Natural History Study that will enable us through an aggregate data base to look at what treatment is working and what treatments are not working. Our hope is that through an international data collection effort, we will get answers to our questions and can be in a better position to make informed decisions.
This past year we have had a lot of success in building the Chondrosarcoma Foundation. We have improved our networking with other organizations, helping and advocating for CS patients and providing valuable information for patients and caregivers to make informed decisions. My hope is that we are on a trajectory to become a stable and unified patient advocacy group with an office and staff to pursue funding for activities that make a difference for CS patients and caregivers.
We have also seen some success in using medications in clinical trials that help reduce the progression of CS and improve the quality of life. My hope is that we continue to find success in these clinical trials and through their use or derivatives we find more utility and more success. For example through the use of these medications or derivatives we find post surgical medications (prophylactics) to prevent recurrence or metastasis.
My wish is that next year brings more success for expanded treatment options and eventually a cure for chondrosarcoma.
All the best, to all of you, and your family and may we all have better days ahead.