Assorted news from last week:
CAC2 Member, the National Brain Tumor Society (NBTS) launched a new research initiative, the DNA Damage Response Consortium, in partnership with Yale Cancer Center. The consortium will bring together a diverse team of renowned adult and pediatric researchers to rapidly advance a new class of promising potential treatments that can target a brain tumor’s DNA damage response network.
More than 60% of patients with relapsed or refractory B-cell acute lymphoblastic leukemia achieved initial complete remission after receiving an investigational chimeric antigen receptor T-cell therapy, phase 1/phase 2 study results showed.
The COVID-19 pandemic has greatly impacted pediatric oncology care, resulting in major staffing issues as well as physical, mental and financial pressure on those who care for children with cancer. But health care providers still managed to provide quality care to pediatric cancer patients, according to results published in American Cancer Society’s journal Cancer.
Adolescent and young adult patients with central nervous system tumors who lived farther from the reporting hospital had a lower risk for death than those who lived closer, according to study results published in Journal of Neuro-Oncology. The reason, researchers wrote, could be that patients traveling from farther away receive treatment at higher-volume facilities with more experience treating CNS tumors.
Blocking a protein chain reaction makes childhood leukemia cells more sensitive to an existing targeted treatment, a new study shows.
Upcoming Webinars and Online Opportunities:
Rare Disease Day at NIH will be held virtually on Monday, Feb. 28, 2022, from 10 a.m. to 6 p.m. EST. This year’s event will feature panel discussions, rare diseases stories, virtual exhibitors and scientific posters. Registration and Information Link.
FDA is hosting a virtual public meeting on March 4, 2022, 9:00 am to 4:30 pm EST in honor of Rare Disease Week. They’ve planned for various stakeholders to share their perspectives/experiences in rare disease product development. Please visit the public meeting page to register.
Recordings of Recent Past Events:
In our February CAC2 All-Member webinar Survivorship Interest Group members, Mariah Forster Olson, Nick Giallourakis and Carolyn Breinich, explained a new project entering the Project Incubator. The team described their plan to create a personalized referral program that will connect survivors, parents, caregivers, family members, nonprofit organizations, social workers and healthcare providers with relevant information and resources.
CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):
- Patti and Al Gustafson (Swifty Foundation)
Take Action:
Childhood Cancer Prevention Day will be held on Monday, February 28. Help share why PREVENTION MATTERS. Access the social media toolkit here: https://www.prep4gold.org/prevention.
World Rare Disease Day is celebrated on February 28th (or 29th in leap years)—the rarest day of the year. This is a global movement to raise awareness for people living with a rare disease, their families, and caregivers. Visit RareCaregivers.org for information and support for caregivers of loved ones living with rare diseases. Be sure to follow and like CAN on Twitter, Facebook, and Instagram and help us spread the word about #RareCaregiverAnd.
The EVAN Foundation is excited to announce the launch of the Evan Lindberg and Erik Ludwinski College Scholarship Program for Childhood Cancer Survivors. High school seniors can apply for awards of $2,500 a year, renewable annually for four years of undergraduate coursework. Applications will be accepted starting March 15th. Two scholarships will be awarded in 2022. For more information, please visit: www.evanfoundation.org.
Parexel, a global leading contract research organization (CRO), has recently created a new Patient Advocacy Manager role to ensure that patient voice and insights are included in all aspects of clinical research. As they build out this new role, they want to make sure they are designing it with the needs of Patient Advocacy Groups and Patient Communities in mind. They ask that you please take a few minutes to answer the seven questions in this survey: https://www.surveymonkey.com/r/2P3FZLB? All answers are anonymous.
