The goal of this briefing is to highlight the gaps of the broken system but also for Congressman Butterfield to announce his intent of introducing the "Rare Cancer Awareness, Research and Treatment Act". I've attached a brief summary of the ACT in case you are interested in learning more - but it includes a major increase in funding for rare cancer research and mandating molecular diagnostics.

We have a fantastic line-up of speakers including:
· David Hysong, Founder, Patient and CEO of SHEPHERD
· Jace Ward, Diffuse Intrinsic Pontine Glioma (DIPG) cancer patient, currently undergoing experimental treatment at Stanford.
· Candace Granberg, MD, Pediatric Urologist, Mayo Clinic
· Reed Jobs, Managing Director of Health, Emerson Collective
· Congressman Butterfield [D-NC], Co-Chair of the Rare Disease Caucus and former Chair of the Congressional Black Caucus
· Greg Simon, Former Director of the Cancer Moonshot
· Brandliee Schafran, Director of Advocacy, SHEPHERD Foundation

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.

This year’s specific theme is the Genomic Testing – helping cancer patients – especially rare cancer patients – learn about this option in their diagnosis and treatment plans. 

Children’s Cancer Cause and the Rare Cancer Coalition invite you to spread the word about rare cancer and the emerging treatment tools currently available. Use the images and infographics available here to join in the day of awareness: https://rarediseases.org/get-involved/rare-cancer-coalition/rare-cancer-day/

CureFest 2020 will take place this September 26 but in a new interactive virtual format that will allow many more families from across the world to participate in their own communities.

This year’s virtual event will feature:

• Rather than one large walk in Washington, DC, this year will feature hundreds of informal neighborhood One Voice walks around the country. 

• Participants will be interconnected virtually through an interactive, custom app that will count the group’s steps for the day. Based on the number of participants, we will have a group goal for steps taken on September 26. There will also be unique ways for families to share updates and words of encouragement with other families.

• Families will have the opportunity to honor their child by submitting a short, personalized video. Each video submitted will be edited into a tribute video that will be shared on social media on September 26 and beyond. Additional details will be provided later this month.

• CureFest program with speakers and performers which will be streamed on September 26, 2020 prior to the community walks.

• Families will have the opportunity to purchase honor beads and medals for survivors, fighters and siblings. We will also have a special tribute for children who have passed away from childhood cancer.

• Families will be encouraged to hold small candlelight vigils in their own yards or neighborhoods the evening of September 26.

Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes more than 300 national organizations coming together in support of the Rally for Medical Research. 

Meetings with House and Senate offices will take place via phone/video conference.

*The registration deadline to participate has passed.

Welcome and Opening Remarks
Margaret Foti, PhD, MD (hc)
Chief Executive Officer of the American Association for Cancer Research (AACR)

Antoni Ribas, MD, PhD, FAACR
President of the AACR

Featured Speaker
Francis S. Collins, MD, PhD
Director of the National Institutes of Health (NIH)

Remarks from Congressional Champions
The Honorable Nita Lowey (D-NY-17)
The Honorable Tom Cole (R-OK-4)
The Honorable Rosa DeLauro (D-CT-3)
Additional Members to be Announced

Closing Video with Advocates

The Alliance for Childhood Cancer will hold a Virtual Day of Action on Wednesday, September 9, with action opportunities and messaging to empower childhood cancer families around the country to speak as a united voice to lawmakers.