All posts tagged: Advocacy

Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

By Guest Blogger CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain [...] Read more

Webinar: Engaging in Advocacy: How to Amplify the Power of Your Story

Join the Pediatric Brain Tumor Foundation for “Engaging in Advocacy: How to Amplify the Power of Your Story.” Presenters for this webinar include Sarah Milberg, Director of Government Relations and Advocacy at St. Baldrick’s Foundation, Ginny McLean, Outreach and Communications Director for the Swifty Foundation, and Rene Marsh, CNN’s government regulation and transportation correspondent. Following this presentation attendees will be able to: • Describe the key steps to creating and telling your personal story for impactful advocacy • Gain an awareness of how your personal story can contribute to successful advocacy efforts • Describe how social media combines and amplifies […]

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CureFest for Childhood Cancer

CureFest 2021 will take place in a hybrid format this September. There will be an in-person event in Washington, DC as well as an interactive virtual format that will allow families from across the world to hold One Voice Walks and other activities in their own communities. ​2020’s virtual-only format allowed us to reach many families that would otherwise be unable to attend CureFest in person. Based on this success, we made the decision to offer a virtual experience in 2021 even though we will have an in-person presence this year in our Nation’s Capital. CureFest for Childhood Cancer will […]

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Primer on State Cancer Action Plans Training Meeting

State-level advocacy is becoming a big opportunity across the country as it gives advocates another way to get involved in addition to going to DC.  This has been more and more apparent over the last year as people haven't felt comfortable traveling as much. The Coalition Against Childhood Cancer (CAC2) and the American Childhood Cancer Organization (ACCO) co-hosted an online advocacy training meeting focused on State Cancer Action Plans on May 11.  Such plans, mandated by the Center for Disease Control (CDC), articulate the challenges and issues posed by cancer in each state and often include goals, objectives, and strategies [...] Read more

Liquid Biopsy for Early Cancer Detection in Patients with Cancer Predisposition Syndromes

In April's CAC2 All-Member Webinar, Dr. Brian D. Crompton (pediatric oncologist at Dana Farber/Boston Children's Hospital) and CAC2 Member Greg Harper (Living LFS) presented about the possibilities with emerging technology identifying circulating cancer cells with liquid biopsies, using Li-Fraumeni Syndrome as a case study. The presentation below described the investigation into a liquid biopsy for Li-Fraumeni Syndrome patients and the EDISYN consortium and how nonprofits partnering with medical research centers to help empower patients and families. Read more

Primer on State Cancer Action Plans Training Meeting

The Coalition Against Childhood Cancer (CAC2) and the American Childhood Cancer Organization (ACCO) are pleased to invite you to a jointly convened online advocacy training meeting focused on State Cancer Action Plans.  Such plans, mandated by the Center for Disease Control (CDC), articulate the challenges and issues posed by cancer in each state and often include goals, objectives, and strategies to help inform and guide communities in the fight against cancer. Primer on State Cancer Action Plans Click above to register (Zoom details to follow) Tuesday, May 11, 2021 7:00-8:30 pm ET 6:00 CT, 5:00 MT, 4:00PT Currently, only 21 [...] Read more

Childhood Cancer Advocacy: Action Day 2021

In April's Special Edition CAC2 All-Member Webinar CAC2 Member Danielle Leach (National Brain Tumor Society and the Alliance for Childhood Cancer) highlighted the opportunity for online issues and advocacy training and pre-arranged Zoom meetings with Members of Congress and their staffs.  Action Day 2021 promises to be very exciting. Thanks to a fully virtual setting, more advocates than ever can participate in effective, meaningful interactions with members of Congress and their staff.  Please register to participate in Action Day activities and advocate virtually for the pediatric cancer community. Action Day Registration Training, April 20, 1:00-3:00 ET Action Day Virtual Hil [...] Read more

Don’t let HOPE die in the US Senate!

By Guest Blogger CAC2 Member Joe Baber If the Creating Hope Act (S. 4010) does not pass the Senate by December 11, THIS YEAR we will lose the best tool we have ever had to inspire drug developers to produce Childhood Cancer and Rare Pediatric Disease drugs. This bill has produced 26 drugs in the last eight years, including two childhood cancer drugs. This is half of the four drugs ever approved specifically for childhood cancer. Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development.  We cannot allow this bill to die on the Senate floor!  The House passed [...] Read more

September 9 Virtual Day of Action: How to Get Involved

By Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation Today is the day! The childhood cancer community is joining together today to use our collective voice to build support for funding for the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever. Advocates across the childhood cancer community are writing to their members of Congress, posting on social media, and spreading the word to their networks about today’s Virtual Day of Action. If your organization would like to participate, please use these materials so we [...] Read more

CC Community News Digest (week of August 24-30)

Assorted news from the last week: Cancer and its treatment may accelerate the aging process in young patients Research has identified a small molecule compound that may make some medulloblastoma patients respond better to treatment Childhood Cancer virtual Action Day planned for September 9 Chadwick Boseman, who died of cancer Friday at age 43, inspired many in roles as King T'Challa, Jackie Robinson and James Brown, but also used his prominence to lift up children with cancer. CAC2 salutes Members Solving Kids’ Cancer, Momcology, Ty Louis Campbell Foundation, and the Max Cure Foundation who worked collaboratively with Friends of Karen [...] Read more