Volume 2 | October 5, 2022 | View in Browser
September Childhood Cancer Awareness month was filled with so many good things! Our Family Funds™, supporters, and donors lit up their communities with gold bows and spent the month Outrunning Osteosarcoma with us, raising funds for osteosarcoma research and patient programs. We launched a Healing Hearts fall workshop series for our bereaved community and published our FACTOR 2022 scientific panels for all to access (links below). September is in our rearview mirror, and we continue to forge ahead. In November, we will bring the osteosarcoma community together in Houston, we are offering bereaved families a workshop on coping during the holidays, and we have another TURBO scheduled. And this month, we are excited to share new updates from the Osteosarcoma Project. Please read on for all the ways you can connect with the osteosarcoma community and Make It Better with us.
Save the date! MIB Agents will be in Houston on November 30th! Come mingle with us at the Blossom Hotel from 6-8pm. Everyone in the osteosarcoma community is invited - doctors, researchers, patients, and caregivers. If you are near the Houston area, we would love to see you!
OsteoWarrior Isaac was diagnosed with Osteosarcoma in his distal right femur in October 2021, the same week he turned 12 years old. He is a sporty boy who enjoys tennis, golf, football, and swimming. He loves math, gaming, and chess. Isaac has many good friends and a younger brother Lucas whom he loves very much.
OsteoAngel Taily was diagnosed with osteosarcoma when she was eleven years old and passed away on January 9, 2022 at the age of 18. She was sweet, kind, funny, and forgiving, but what stands out is how feisty, courageous, strong-willed and persistent she was. Her family set up a Family Fund in her honor, to ensure that other children, teens, and young adults in her situation have the necessary resources and emotional support.
Our partners at @Count Me In are looking to engage anyone in the United States or Canada who has ever been diagnosed with osteosarcoma. Parents of children who have received an OS diagnosis are also able to sign up for the study on their child’s behalf. After signing a required consent form, participation takes about an hour, and includes optional aspects such as completing a medical release form, responding to surveys, and providing saliva and/or blood samples to the study.NEW! In some cases, the OSproject may be able to share information about what the study team has learned from the genomic sequencing of a participant's tumor sample back with the participant. The project is also partnering with Invitae in order to sequence and share information on germline DNA back with participants at no cost.Watch this video to learn more and visit OSProject.org
If you have a job posting and you would like it included here, please email email@example.com.
A virtual tumor review board for osteosarcoma, TURBO is open to clinicians or researchers with an interest in osteosarcoma. Patients and families are welcome to ask their oncologists to present a case on their behalf. Join TURBO to request an invite or submit a case.Next meeting: November 9th at 5pm ET.
We love Anya's smile when she is opening up her Warrior Mail! OsteoWarriors receive monthly letters of hope and cheer from MIB Agent Writers around the world. Sign up to receive or write letters.
MIB Agents is offering a special Healing Hearts During the Holidays workshops at two times on November 21st: 7pm ET and 7pm PT. Led by grief counselor Lori Krause, these workshops are free of charge to bereaved parents.
The Osteosarcoma Institute (OSI) is now accepting Letters of Intent for their 2022-2023 funding cycle for clinical trials, correlative studies, and translational studies! There are two grant categories: Clinical trials (up to $800,000 over two to three years) and Correlative studies ($250,000 – $500,000 over two years). Submit by November 15, 2022.
If you have a trial that is currently enrolling osteosarcoma patients and you would like it included here, please email firstname.lastname@example.org.
BTG provides rescue medicines typically used in emergency rooms and intensive care units to treat patients for whom there are limited treatment options. They are dedicated to delivering quality medicines that make a real difference to patients and their families through the development, manufacture, and commercialization of pharmaceutical products. Their current portfolio of antidotes counteracts certain snake venoms and the toxicity associated with some heart and cancer medications. Their drug, Voraxaze, is for high-dose methotrexate toxicity.Learn more about methotrexate.
Osteosarcoma Institute (OSI), a nonprofit organization led by osteosarcoma experts from top U.S. cancer centers who, together, are concentrating on the cure ® for osteosarcoma. The mission of the OSI is to dramatically increase treatment options and survival rates in osteosarcoma patients through identifying and funding the most promising and breakthrough osteosarcoma clinical trials and science. In addition to advancing research, OSI also provides a free resource called OSI Connect for osteosarcoma patients. Their osteosarcoma experts can discuss available treatments, possible side effects, and provide helpful advice for getting the most out of your visits with your treating physician. This resource is available in English and Spanish and aims to help patients and families find answers to their questions.