Holiday Wishes and New Year’s Resolutions
Like most of us, I am glad this year is coming to a close and am looking forward to a better year ahead. My holiday wish to my fellow Chondrosarcoma Warriors and families is that you enjoy and cherish the holidays with your family and wish that you have no pain or suffering.
It hurts my heart and elicits bad memories when I read about you being in pain and reading that your tumors are growing and spreading. On the flip side, it gives me hope and inspiration when I see the acronym NERD (No Evidence of Reoccurring Disease), when I read that your masses are getting smaller and, in some cases, disappearing.
I made a promise to my daughter Shayna that I would create the Chondrosarcoma Foundation to create public awareness and advocate on behalf of CS Warriors. We rolled out the foundation with our Web Site on May 14 (six months after Shayna passed away) and despite the pandemic we have built the infrastructure for a Non-Profit Charitable Organization and held our first virtual dialogue within six months.
1. Chondrosarcoma Awareness Day: February 6, 2021
We are going to work hard to raise public awareness about Chondrosarcoma and support CS research. On February 6, we are proclaiming that day (Shayna’s birthday) as Chondrosarcoma Awareness Day and set out to do the following:
1. A Media and Social Media Blitz to educate the public about Chondrosarcoma, a rare bone and soft tissue cancer effecting an estimated 4500 people world-wide each year.
2. Reach out and have as many people as possible sign a petition supporting Chondrosarcoma Research: www.csfshayna.org/support-cs-research
3. On February 6, wear a yellow ribbon to show your support for Chondrosarcoma Awareness Day.
4. (Optional) Encourage pictures with you, family and friends wearing a Yellow Ribbon on Social Media and use the hashtag: #cswecare
We ask that all of you join and encourage your family, friends and colleagues to get involved and help us build a strong coalition to support research for Chondrosarcoma.
2. Virtual Dialogue: Straight Talk About Chondrosarcoma
Due to the success of our first Virtual Dialogue, we are planning to host two more next year. Like the first event, we want to establish a dialogue between CS Warriors and Oncologists, Sarcoma Specialists and Oncology Surgeons.Our first Virtual Dialogue is being planned for in late March (date to be announced). We will feature Jonathan Trent, M.D. from the Sylvester Medical Center / University of Miami who will talk about his clinical trials with Tibsovo: Ivosidenib an IDH 1 / 2 biomarker inhibitor. We also plan to host a second Virtual Dialogue in late Fall, 2021 to present effective strategies for pain management. Let us know if we should include any additional topics or presenters as we plan these events.
3. Hosting a Social Event for Camp Sunrise
Provided the pandemic will be behind us, we are planning to host a barbecue and social event in late July for Children with Cancer at Camp Sunrise in Annapolis, Maryland. Camp Sunrise is sponsored by Johns Hopkins and Shayna worked as a counselor there for three consecutive years.
4. Keeping in touch and informed
I will continue to be a member of the Chondrosarcoma Support Groups. I want to thank all of you for your courage and willingness to share your stories, they educate and inspire and I know your concern for each other and willingness to share is very meaningful. People who are newly diagnosed know that they are not alone and we encourage everyone to keep fighting.
I will continue to post research and clinical trial findings on Chondrosarcoma on our News Blog. When it is vital, I will post it also on the Facebook Support Group page.
I specifically want to thank Mike Snyder, David Bowles, Clifford Binariz, Lynette Veelman and Brenda Segelken for the support, guidance and help you have provided this past year.
I made a promise to my late daughter that I will take up the cause and advocate for more effective treatment and clinical research and clinical trials that specifically address Chondrosarcoma. I pray that one day soon we will have a cure for Chondrosarcoma and hope that I see it in my lifetime.
I will stand and fight with you and for you. All the best to each of you this coming New Year.