Holiday Wishes and New Year Resolutions
Just want to wish everyone the best for this holiday season. May you all cherish the moments with your family and blessings to you all for a Healthy (Pain-free) Holiday Season and a Happy New Year.
I continue to be amazed by the caring and compassion you have for each other and for everyone that shares their journey with this beast. I want to encourage you to continue to support one another because it makes a difference.
My New Year’s Resolution is that I will keep fighting for the cause and through our collective efforts, and look for answers to our questions, solutions to our problems, effective treatments that work and ultimately a cure for this horrible, rare cancer. I will also continue to advocate for your unmet needs and do what ever I can to make your life easier and bearable.
For the fourth consecutive year we will host Chondrosarcoma Awareness Day on February 6 (Shayna’s heavenly 33rd birthday). We ask that you join us in wearing something Yellow, post pictures wearing Yellow on social media platforms with #cswecare #chondrosarcoma #chondrosarcomafoundation. We also ask that you submit your name and e-mail to support research and clinical trial: www.csfshayna.org/support-cs-research
We had several achievements this past year. On March 1, we launched the Chondrosarcoma Patient Registry. The Registry is a platform for patients around the world to strengthen their voices and collectively share information about this rare bone cancer. This global resource will provide data for researchers to use to advance drug development and treatment options to help improve patient care. At present we have 234 participants in the registry, and we are preparing to conduct our first data analysis. We invite and encourage you to share your story by participating in the registry.
https://chondrosarcoma.iamrare.org
We also established a Patient Advisory Board and collectively wrote three publications to provide straightforward resource information to CS Patients and families that were newly diagnosed or have a recurrence / metastasis of the disease.
Chondrosarcoma: What You Need to Know
https://csfshayna.org/site/wp-content/uploads/Chondrosarcoma_what_do_you_need_to_know.pdf
Selecting A Sarcoma Treatment Center
https://csfshayna.org/site/wp-content/uploads/Selecting_a_Sarcoma_Center_Final.pdf
Insurance Authorizations: Getting Your Care Approved
https://csfshayna.org/site/wp-content/uploads/Insurance_Authorization_and_Getting_Your_Care_Approved.pdf
