Childhood Cancer Awareness Month : Updates from Washington

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As Childhood Cancer Awareness Month continues, we bring you a round-up of some of the biggest moments so far. Last week, the childhood cancer community came together in Washington, DC, for a series of powerful, action-oriented events.

Among the highlights:

We were proud to co-host an Externally-Led Patient Focused Drug Development (EL-PFDD) workshop on chemotherapy-induced hearing loss in pediatrics, in partnership with Momcology, Mattie Miracle Cancer Foundation, and the Children’s Brain Tumor Foundation. This half-day meeting featured a series of facilitated panel and audience discussions focused on providing the FDA with patient perspectives on a survivorship issue with a significant unmet need and quality-of-life burden.

This EL-PFDD was an incredibly empowering day for childhood cancer survivors and family members, giving them a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives and their families. Approximately 200 stakeholders participated, either in person or via webcast, and we heard over and over again about the impactful and emotional power of this event.

The below excerpt includes welcome remarks from Cat Paciente of Momcology. Cat spoke for so many of the families of attendance and set the tone for the day when she said: “I’m beyond grateful for the gift of my son exactly as he is. I love him and cherish him and his trials have in many ways made me the person I am. But none of that means that he didn’t deserve - and doesn’t deserve - better. … I can’t change his history, and I might not be able to change the landscape for him. But sharing his story may very well change it for others.”

You can find the full webcast recording here. In the coming weeks and months, we’ll share more outcomes from this meeting, including a formal report.

CCCA’s Communications Director Jess Kean with Grandparents In Action founding members Joe Baber and Tom Pilko, at The Golden Toast.

CCCA’s Communications Director Jess Kean with Grandparents In Action founding members Joe Baber and Tom Pilko, at The Golden Toast.

After the EL-PFDD workshop concluded on September 13th, we switched gears and joined fellow childhood cancer advocates at The Golden Toast at the Library of Congress.

The Golden Toast was co-hosted by two coalitions that Children’s Cause is a member of — the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer (CAC2), along with The Leslie Carson Foundation. It served as a beautiful opportunity for the community to come together in celebration of our shared legislative achievements over the past year, including passage of the RACE for Children Act and the Childhood Cancer STAR Act.

Representatives Michael McCaul, Jackie Speier, G.K. Butterfield and Mike Kelly received well-deserved recognition for their leadership as champions for our children.

The legislative focus continued the next morning, with the Congressional Childhood Cancer Caucus’s 9th Annual Summit on Capitol Hill, where the community had an opportunity to hear from Reps. McCaul and Kelly, as well as Dr. Ned Sharpless, Director of the National Cancer Institute:

Dr. Sharpless shared updates on the Cancer Moonshot, immunotherapy breakthroughs, and developments in big data. He emphasized the huge achievement of a $2 billion boost in NIH funding in FY2019, calling it “a testament to the broad bipartisan support for cancer research but it’s also a real testament to [the advocacy community].”

Director Sharpless also put a strong emphasis on the importance of basic science, which is defined by the NIH as ‘research that supports a broad understanding of human behavior and biology.’

On the STAR Act, Dr. Sharpless thanked childhood cancer advocates for this “magnificent achievement,” calling it “a real tool for the National Cancer Institute. It gives us a set of goals and powers that make our ability to treat and study and work on and actually influence the outcome of childhood cancer much greater.” On implementation, he said there will now be new pediatric oncology voices represented on relevant boards and there will be a new emphasis on biorepositories and banking samples.

In another exciting nugget, Dr. Sharpless told us: “I suspect - I am very confident - that we will have a new funding announcement related to childhood cancer and survivorship to announce in 2019.”

At the conclusion of the Summit, Rep. McCaul shared breaking news that the House and Senate had reached a conference agreement to fully fund the STAR Act in FY2019, a huge win for the community and a testament to the strength of our combined advocacy efforts!

We have to double down and continue to invest in basic science. That’s where the really good ideas come from. They start in the lab.
— Ned Sharpless, NIH Director

On Saturday and Sunday, we joined with families and organizations from around the country for CureFest, an annual event that Children’s Cause is proud to help support as a bronze sponsor.

If you missed CureFest, there was fantastic live coverage of the many events broadcast on their Facebook page. We encourage you to check out the photos and videos - and make plans to join in next year. Organizers have already announced that the dates will be September 20-22, 2019.

In other notable news, we congratulate our colleagues who received RareVoice Awards at the 7th annual celebration on September 12th. We also thank and recognize Hyundai Hope on Wheels for their 20th year of supporting childhood cancer.

The month isn’t over yet! Next week we’re hosting a free webinar - Hope on the Horizon: New Treatments for Childhood Cancer - designed for anyone interested in learning about the latest ground-breaking developments in childhood cancer research. We'll hear from a pediatric oncologist, a CAR-T researcher, and a pharmaceutical representative. Join us on Wednesday, September 26th at 3pm EST: Register here.

We’ve included some photos below from last week’s events. Do you have photos of your own, from these events or others around the country? Please share them on social media and tag us!