Time to accelerate

 

Last week several parents, survivors and patient advocates from Europe and the U.S. united in Brussels for the CDDF-ITCC-SIOPE 4th Paediatric Oncology Conference. The title of this year’s meeting was: Accelerating the Development of New Oncology Drugs for Children and Adolescents.

Debbie Binner of Create for Chloë presented the Unite2Cure movement along with Chris Copland, Consumer Representative, National Cancer Research Institute and Nicole Scobie of  Zoé4life. The presentation was very well received, and as Debbie explained later, the conference ended with a general sense of possibility. “Believe me the first CDDF conference was very very different to this one.  Us parents were fighting to be heard – and now there is such a sense of integration and collaboration and a real sense that we are making some progress.  Although obviously there is a long long way to go.”

 

A few key moments:

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Patricia Blanc presents

Patricia Blanc of Imagine for Margo‘s presentation on new incentives for pharmaceutical companies to invest in paediatric research was brilliant. Her voice is powerful and the work of her Working Group on this project has moved forward with an action plan. Nancy Goodman of KidsVCancer gave an excellent and comprehensive update on the successful US Creating Hope Act regulation.

Angela Polanco of Bethany’s Wish participated actively in a round table discussion on the new incentives topic, and explained that parents want to be involved from the very beginning in the process of approving paediatric investigation plans and participating in the development of clinical trials.

 

Chris Copland spoke up several times, passionately advocating for change to the Paediatric Medicines Regulation. He and Anne will be speaking on behalf of Unite2Cure today, January 27th in front of the European Parliament at an event organized by SIOPE in honour of International Childhood Cancer Awareness Day. This influential awareness raising meeting entitled ‘Speeding up Innovation, Saving Lives’ will be hosted by  MEP Ms Glenis Willmott. The goal is to address the development of paediatric cancer medicines and an enabling legislative and regulatory environment. In plain words: we are asking for very specific changes to the regulations NOW.

 

Leona Knox, of Solving Kids Cancer-Europe spoke with a powerful message, summarizing her feelings about the 2 day conference. “I am one of the parents here who won’t be going home to my son tonight. Oscar died, not because he had cancer, but because he ran out of treatment options. We parents have come here on our own time, and have worked so hard to make sure we understand what you have presented.” She told the audience of mostly pharmaceutical company representatives, pediatric oncologists and regulators. “Our goal is to save kids’ lives. We are working so hard to come up with solutions, and I just want to ask you all, to please help us fix this, whatever it takes.”

Both Samantha Schoolar of Bethany’s Wish and Jaap den Hartogh of VOKK spoke very clearly about the long term side effects survivors of childhood cancer experience and the need to speed up better treatments as well as research into late effects. “A real cure means being part of society once more,” explained Jaap, who called for new, better, and less toxic medicines as well as access to long-term follow up care for every survivor in Europe.

 

It was inspiring to hear Peter Adamson, the Chair of the Children’s Oncology Group stand up to remind the audience that the title of this conference was “Accelerating the Development of New Oncology Drugs for Children and Adolescents”, and that, having attended these conferences for the past several years, he did not want to just have the same conversations as every year. It was time to actually accelerate.

 

Gilles Vassal, past president of SIOPE and Director of Clinical and Translational Research at the Institut de Cancérologie Gustave-Roussy made a clear call to “change the mindset“.

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Change the mindset!

The summary of the decisions and plans as a result of the conference are, briefly:

-a strengthening of the  CDDF-ENCCA – ITCC-SIOPE platform with terms of reference, a website and a new name (to be announced!).

-position papers will be created by Working Group 1 on the issues of adolescent inclusion in adult phase one trials and on mechanism of action as a determinant for paediatric investigation plan requirements.

-a position paper is being drafted on Working Group 2’s proposals for new incentives

-a white paper will be put together by Working Group 3 regarding long term follow up for children receiving new drugs. This group met immediately after the conference to continue preparing this document.

Gilles Vassal emphasized that parents and survivors must continue to advocate for change for all of these plans to happen.

He ended the conference with one sentence, that summarizes the event, “We are even stronger if we work together.”

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The view over Brussels on the flight home

 

 

 

 

World’s Children Raise their Voices for Childhood Cancer in New Single

raiseyourvoice

Every day 700 children are diagnosed with cancer. It’s time to raise our voices.

Some of the most famous singing kids on YouTube are forming a supergroup to raise awareness about childhood cancer. And the best part? The children of the world are invited to join in!

At child4child.com kids can sing and record the chorus of the song, which will then be released on Feb. 15th, 2016—International Childhood Cancer Day. The song “We Are One” has been created by Christophe Beck, the composer for Disney’s smash hit Frozen.

Childhood Cancer International (CCI) is an umbrella organization currently representing 180 parent-led childhood cancer organizations in 90 countries. Today CCI has launched child4Child.com, the first global initiative where their member organizations join forces to raise awareness of childhood cancer. Of the 250,000 children that are diagnosed with cancer each year, about 90,000 of them will lose their lives to the disease, making cancer the number one non-communicable disease-related cause of death of children worldwide. The organization has now teamed up with some of the most talented singing kids on YouTube, many of them famous for their appearances on talent shows such as America’s Got Talent, The Voice Kids Australia and Britain’s Got Talent. Their performances have together reached over 300 million views on YouTube.

The new song “We Are One” is written by internationally acclaimed composer Christophe Beck, most known for creating the score to Disney’s smash hit Frozen.

“I’ve composed the scores to over a hundred films, including Hollywood blockbusters such as The Hangover, Ant-Man, and The Peanuts Movie. But this has by far been one of my most challenging assignments. Luckily I had my daughter Sophie by my side, a talented and precocious musician and songwriter herself, along with lyricist David Goldsmith, who wrote some beautiful words to inspire us. The three of us have been working on the song together and I am extraordinarily pleased with the results,” says Christophe Beck.

Children are invited to sing and record the chorus of the song on the child4child.com website starting January 11th. One month later on February 15th, the International Childhood Cancer Day, the song will be released on music streaming platforms such as Spotify and iTunes. The chorus of the song will contain all voices recorded on the website.

“With the song ”We Are One” we wish to honor all children of the world, particularly those in their courageous battle against cancer,” says Carmen Auste, the current Chair of CCI and the mother of a childhood cancer survivor.

Child Ambassadors for the campaign are Alexa Curtis (winner of The Voice Kids Australia 2014, Livvy Stubenrauch (the voice of Anna in Disney’s Frozen), Robbie Firmin (Britain’s Got Talent) and Aaralyn O’Neil (America’s Got Talent).

 

Children from around the world can visit the website from January 11th until early February. Then on February 15th, International Childhood Cancer Day, the chorus version of all of the children who had recorded themselves singing will be launched on global music platforms.

A music video will also be released on YouTube with clips of the children who have helped record the chorus.
Join the chorus of children around the world in solidarity with those battling cancer.

We are one.

We are strong.

And we will sing this song together

So sing along

And as one

We will rise

We won’t give up the fight until the night

Yields to the sun

We are one.

Two MEPs join the fight

On November 10th, 2015 Françoise Grossetête and Glenis Willmott, MEPs highly involved in the cause of children with cancer for many years, joined with Unite2Cure to CALL FOR IMMEDIATE ACTION to give more children and adolescents the prospect of a better life.

Their letter to Mr. Andriukaitis, Commissioner for Health and Food Safety, requests that the Commission immediately evaluate the situation and the application of the Paediatric Regulation, in order to be able to correct it as soon as possible.

As they state in their letter, today in Europe, children with cancer and other life-threatening diseases are being denied access to potentially life-saving treatments. This is a public health issue of prime importance. Cancer is the leading cause of death by disease in children across EuropeEach year, 35,000 children and adolescents are diagnosed with leukaemia or malignant solid tumours and 6000 of them die. Of the survivors, 40% will be left with severe long term side-effects which impact their daily life. For some conditions with a poor prognosis, only very limited improvements in treatments for children have been seen in recent decades.

The time for action is NOW.

To read the full letter to Commissioner Andriukaitis, click here