CC Community News Digest (July 5-18)

Assorted news from the last two weeks:

Cures for many rare diseases might already exist. Why aren’t we using them?

Patient advocacy groups have long helped researchers find participants for clinical trials and consulted with regulators on pressing needs for their constituents. But they must now play a more active, integral, and permanent role in accelerating — and funding — tomorrow’s innovations.

“She died. Our world fractured. It wasn’t so much that we became suddenly, brutally, a family of three. It was more like we unbecame a family of four.”

The Annual Report to the Nation on the Status of Cancer provides recent trends in rates of new cancer cases (incidence) and death rates (mortality) in the United States. The most recent Annual Report to the Nation was released on July 8.

Radiation therapy for children and young adults with medulloblastoma—a type of fast-growing brain cancer—may eventually move away from a one-size-fits-all approach. Results of a large clinical trial suggest that some kids can safely get less radiation without limiting their long-term survival, whereas others may need the standard doses.

The administration’s vision for ARPA-H has come into sharper focus this week thanks to Collins’ recent interviews and congressional testimony, as well as an article he and Eric Lander, the director of the White House Office of Science and Technology Policy, recently published in Science.

Upcoming Webinars and Online Opportunities:

CureSearch continues the 2021 CureSearch Virtual Summit Series with the third session:  The Journey of a Post-Mortem Tissue Donation.  This session will focus on post-mortem tissue donation and the research potential for this tissue. Panelists will discuss approaching families about tissue donation: the reasons these conversations are so important, the benefits donation confers to the entire community, and some suggested approaches to having these sensitive but critical conversations. We will discuss ethical guidelines for post-mortem donation as well as the collection process and the applications for post-mortem tissue in research.

Video links available for the public sessions of the 2021 CAC2 Annual Summit.

The Ohio Department of Health has opened registration for the first annual Childhood Cancer Summit to be held ONLINE Sept 16-17. This FREE event is family-focused and includes a range of topics that are important to patients and caregivers at all stages of this experience, regardless of where you live.

Both in-person and virtual CureFest registration is now open!  Make your plans for September 25-26.

•  Julie Guillot (Leukemia and Lymphoma Society)
• Amy Sapien (PREP4Gold)