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Held in conjunction with 51st Congress of The International Society of Pediatric Oncology

We are happy to announce that the annual Childhood Cancer International (CCI) conference is in Europe again, this time in Lyon, the 3 rd largest city in France, where Auguste and Louis Lumière invented the cinematograph. It will be an excellent occasion for a double celebration:
1. 50 years ago, in Madrid, Spain, the SIOP community was established;
2. 25 years ago, in Valencia, also in Spain, ICCCPO – now CCI was founded with the mission of “sharing information and experience between parent groups around the world, and with all others involved in the treatment and care of children with cancer, in order to ensure the best possible access to treatment and care for children with cancer everywhere in the world.”
The conference will be held at the Lyon Convention Centre. Information about the Convention Centre can be found here.
Initial information about the conference, visit the official website for SIOP.
  • Visa Information: Please check in advance if you require a visa to enter France.
  • Hotel: Please consult the official website of the conference for the best options in terms of accommodations.
  • Registration: Registration is open. You can register online here, or by clicking the button below. Please note: Early bird registration is July 31, 2019.
Registration is NOW OPEN
  • Stipends: A limited number of stipends is available for members of Low Income Countries. You may download Stipend Guidelines and the Application form here.
Abstract submission is now open!
Submission Deadline: Tuesday, April 2, 2019. Please note, there will be no extension to the deadline. Abstract Submission Form Preliminary Program

In order to simplify the organization of the event and everyone’s agenda, but still maintain the importance and pleasure of networking, we have decided to combine the CCI Meet and Greet and CCI Gala Dinner into one event only (on Tuesday 22 nd ). Doing so, will also allow to attend SIOP’s networking event to those who want.

See below for the broad schedule to help with your travel arrangements:

We look forward to continuing these conversations and welcoming you all to Lyon in October, for a memorable and enriching learning experience.

2019 CCI Lyon Annual Conference Board Steering Committee
João de Braganca (Conference Chair) on behalf of the organising Committee
Luisa Basset (Conference Secretariat)

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In the event that you have quite recently changed from Windows to Mac, you may discover that most key alternate ways don’t take a shot at Mac. For instance, when an application crashes on Windows, a direction Ctrl-Shift-Esc is accustomed to raise the Task Manager and quit the culpable procedure. Shouldn’t something be said about a Mac? How can one execute such procedures at whatever point Safari or Mail crashes and bolts the machine up?

One of the techniques is to tap the Dock symbol and select “Power stopped.” But what do you do when the Dock won’t spring up? This blog entry will clarify what could be compared to Task Manager and how to see running procedures in macOS.

How to open Task Manager on Mac?

1. Undertaking Manager = Activity Monitor

Right off the bat, we might want to make reference to that what might be compared to Task Manager on Mac is Activity Monitor. Movement Monitor lets you effectively see dynamic procedures that are running on your Mac, oversee them, and even stopped undertakings or applications.

Regularly even one application or running procedure can fundamentally corrupt your Mac’s execution. How would we distinguish such a program among twelve applications running out of sight?

Discover Activity Monitor in Launchpad.

Apple Activity Monitor

On Activity Monitor you can screen numerous parameters of the framework, for example,

CPU stack

Slam memory

Vitality utilized

Circle space

System observing

You will immediately have the capacity to distinguish the procedure that is expending an excessive number of assets of macOS.

2. How might you Force Quit on Mac?

A rundown of running projects can be likewise seen in a “Power Quit” exchange. This can be gotten to by a straightforward console alternate way Command + Option + Escape, or through the Menu → Force Quit.

3. Use Terminal* to see a rundown of running procedures.

For the individuals who lean toward working with Terminal, there are basic directions to see the rundown of running projects. Simply open the Terminal and type just a single word:

4. Screen Memory Usage with Memory Cleaner

Memory Cleaner is a free utility to clear idle RAM memory. With the application, you can gain admittance to memory use directly from the menu bar. The application additionally enables you to execute or quit running applications.

As should be obvious, there are different counterparts of Task Manager on Mac. Movement Monitor is one of them. It is worked in utility that is utilized by most Mac clients. Be that as it may, on the off chance that you need to screen RAM memory utilization and clear dormant RAM, we would prescribe Memory Cleaner beneath.

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The 10th CCI Europe Regional Conference will take place from May 22-24, 2019 in Prague (Czech Republic). Since a jubilee is suitable for a premiere, the conference will be in partnership with the first edition of the SIOP Europe Annual Meeting (May 20-25, 2019).

If you can, take the opportunity and attend the whole conference-week – to network, to exchange, to gain new insights and knowledge – not only within the CCI community but throughout the whole childhood cancer community! Several sessions are open and you will be able to participate in, while some others are closed and only for members of specific tumour groups. The complete program should be available soon. More information on the program here: http://siopeurope.eu/2019/01/28/the-programme-for-the-siop-europe-2019-annual-meeting-is-now-online/

On Monday and Tuesday there will be several parallel meetings and sessions of the expert groups. Most of them have already expressed an interest in organizing joint sessions and meetings with CCI Europe.Wednesday, May 22, will be a joint day for all participants, including all expert groups. On Thursday and Friday, the CCI Europe Regional Conference will take place in parallel to other expert group`s meetings. The program which will comprise networking opportunities, interactive sessions and exciting topics will end on Friday at lunch time. As usual there will also be a great social event on Thursday evening.

Please kindly note that this meeting is by invitation only.

If you would like to receive an invitation, please click on the ‘invitation form’ and fill in your name and email address (this will not take more than a minute). Kindly note that only invited members and friends will be allowed to attend the conference.

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Childhood Cancer International (CCI) provided its overwhelming support on Friday September 28th for the World Health Organization’s (WHO) announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.

Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.
Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.

How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, President of Childhood Cancer International and CEO of the American Childhood Cancer Organization (ACCO) “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little, but are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world” notes Ms. Hoffman. Childhood Cancer International will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.

No More Complacency - YouTube

The Target Goal of the WHO Global Childhood Cancer Initiative is to achieve at least 60% survival for all children with cancer by 2030. This represents an approximate doubling of the current cure rate and will save an additional one million children’s lives over the next decade.

The objectives are to:
  • Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;
  • Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship care inclusive of the needs of childhood cancers;
  • Improve access to affordable essential child cancer medicines and technologies;
  • Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;
  • Prioritize cancer as a child health priority and increase available funding at the national and global levels.

This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.

WHA70.12: Cancer prevention and control in the context of an integrated approach

Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come

*Some Stakeholders include: The International Society of Pediatric Oncology (SIOP), Intenational society of pediatric oncologists, Union for International Cancer Control (UICC) International Atomic Energy Agency (IAEA), International Agency for Research on Cancer (IARC), Sick Kids Hospital of Toronto, Texas Children’s Hospital, World Bank, Pediatric Oncology Rally to Transform Access to Global Essentials (PORTAGE), Friends of Cancer Patients (FOCP), Chai Clinton Health Access Initiative (CCHAI), BIO Ventures for Global Health (BVGH), Pharmaceutical Industry, International Federation of Pharmaceutical Manufacturers & Associations (IFPMA

Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international development organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda. www.childhoodcancerinternational.org

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, President, Childhood Cancer International. rhoffman@acco.org; _+1-202-262-9949.

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Conference Theme: Advancing Cure, Transforming Care

16 – 19 November, 2018, Kyoto, Japan
(in conjunction with 50th Congress of The International Society of Paediatric Oncology)
Dear Members, Survivors and Friends,
We are happy to announce that after 5 years, the annual Childhood Cancer International (CCI) conference is
back in Asia!!
Our conference theme this year is our CCI tagline: Advancing Cure, Transforming Care. This builds on the promise our founding members made 24 years ago that children with cancer everywhere, will get the best possible treatment and care.
The conference will be held on 16-19 November 2018 in Kyoto, one of the most beautiful historical cities in Japan and the Imperial Capital of Japan for 1,000 years. The CCI Survivors Program will be on 14-15 November 2018. You will find the initial information about the conference on the official website,
https://siop.kenes.com/2018
Local Host: Children’s Cancer Association of Japan (also celebrating 50 years in 2018)
Conference Venues: 16 Nov am: ROHM Theatre Kyoto, 16 Nov pm – 19 Nov: ICC Kyoto

The topics will cover:
1) Understanding Impact of Having A Child with Cancer on Family Dynamics (e.g effect on Parents Health and couple relationships, effect on siblings, and effect on family quality of life);

2) Unpacking Standards of Care for Adolescents and Young Adults with Childhood Cancer;

3) Emerging Trends in Survivorship Care and Reintegration Programs;

4) Exploring Innovations and Best Practices in Childhood Cancer Care (with focus on psychosocial support, nutrition, education, supportive care, grief and bereavement, palliative care and pain management);

5) The Role and Contributions of Parents and Families in Multidisciplinary Treatment and Care;

6) Engaging and Mobilizing Stakeholders for Organizational Growth and Impact.

FULL PROGRAM HERE: SIOP 2018 Programme Final 8-5-18

The 50th Annual Congress of the International Society of Paediatric Oncology will take place November 16-19, 2018 in Kyoto, Japan, in partnership with Childhood Cancer International. Experience 4 outstanding days of cutting-edge science, engaging debates and networking with world renowned experts. Join the Community striving towards a world free of childhood cancer.

More information here:  2018 Kyoto Conference

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Dear Parents, Survivors, Family Members, and Volunteers,

On behalf of the Board of Trustees of Childhood Cancer International (CCI) and the Congress Local Organizing Committee I am delighted to welcome you to the Annual SIOP Congress! As in previous years CCI is proud to be a participating partner at this event.

Together you are a part of CCI’s global network of 188 member organizations in 96 countries, all strongly committed to ensure that children and adolescents with cancer receive the best treatment and care wherever they may be. This year we are excited to celebrate the 50th anniversary of the SIOP Congress in Kyoto, Japan and it is only fitting that our annual meeting and annual general assembly is held in the country of one of CCI’s founding members.

We are thrilled to announce CCI’s Opening Keynote Address will be given by HRH Sheikha Jawaher Bint Mohammed Al Qasimi, Wife of the Ruler of Sharjah, Founder and Royal Patron of the Friends of Cancer Patients Society (FoCP) – a member of CCI. Her talk will focus on Responding to the Challenges of Global Childhood Cancer. This will be followed by a panel discussion and a Congress program including keynote lectures, group and panel discussions, workshops, small group meetings, poster presentations and the opportunity for each of you to interact, share, grow and contribute towards a world that makes childhood cancer a global health priority.

Enjoy the conference, Kyoto and its ancient beauty and the time spent with each other.

Looking forward to seeing you in Japan,

 

Ruth I Hoffman, MPH
CCI President, Board of Trustees

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A white pupil in flash photos can be an early sign of retinoblastoma. All over Europe we are fighting against childhood eye cancer.

Together​, we are stronger! That is why we need your support! On Sunday, 16th Oct. 2016, at 9:00 CET a Europe-wide retinoblastoma campaign will start via Facebook, Twitter and Instagram! Even among rare diseases retinoblastoma appears seldom. The more important it is to make people aware of it. The Austrian Childhood Cancer Organization (a CCI member organization) ​acts together with the following retinoblastoma networks from Europe to start this great action:
  • Kinderaugenkrebsstiftung KAKS (Germany)
  • Rétinostop (France)
  • Childhood Eye Cancer Trust – CHECT (UK)
  • Associazione Italiana per la Lotta al Retinoblastoma ONLUS (Italy)
  • Retinoblastoom Vereniging Nederland – RBVN (The Netherlands)
What can you do to support the campaign?

The magic words are: Like it, share it, retweet it and post it – via Facebook, Twitter and Instagram. As the campaign is already underway…, GO!

Hashtags to use: #retinoblastoma #retinoblastome #retinoblastom #awareness #Europe #EURbG #eyecancer #knowtheglow #leucocoria

Be part of it!

I​f you have any questions, please contact the Austrian Childhood Cancer Organization: ​oesterreichische@kinderkrebshilfe.at

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It’s official: Brain cancer has replaced leukemia as the leading cause of cancer deaths among children and adolescents.

In 1999, almost a third of cancer deaths among patients aged 1 to 19 were attributable to leukemia while about a quarter were caused by brain cancer. By 2014, those percentages were reversed, according to a report published Friday by the National Center for Health Statistics, which is part of the Centers for Disease Control and Prevention.

“It’s a milestone moment, a kind of changing of the guard,” said Sally Curtin, who was the lead author of the report. She said the change reflected a reduction in deaths from leukemia, rather than an increase in deaths from brain cancer.

Overall, the report showed, cancer death rates among children and adolescents dropped 20 percent between 1999 and 2014, continuing a long-term trend.

The number of brain-cancer deaths first exceeded those from leukemia in 2011, Curtin said, but it wasn’t until 2014 that the gap was large enough that statisticians concluded it was “a true finding.”

The decrease in deaths from leukemia, once universally lethal, is a result of the enormous strides oncologists have made in recent decades in developing effective chemotherapy regimens and finding the best ways to use radiation and bone-marrow transplants, said Elizabeth Ward, senior vice president for intramural research at the American Cancer Society.

By contrast, she said “brain cancers are generally very hard to treat,” partly because surgeons have to be careful not to damage healthy tissue during operations and partly because of the blood-brain barrier, which prevents some drugs from getting into the brain

By Laurie McGinley, September 16 2016

​Read more @ the Washington Post: https://www.washingtonpost.com/news/to-your-health/wp/2016/09/16/brain-cancer-replaces-leukemia-as-the-leading-cause-of-cancer-deaths-in-kids/

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How are you feeling?

I get that question a lot. How do you feel? How are you doing? How are you holding up?

It’s comforting to know that people care. But it’s also so hard to answer. The emotional range inside me can be quite vast. Sometimes I’m not even sure how I feel.

I don’t think I will ever go back to how I felt “before”. That’s because even when things are looking really good for Elliot, really quite optimistic, there is one feeling I can’t seem to get back: feeling carefree. That feeling has left the building.

There’s one feeling that is constant, that I think many cancer world inhabitants can relate to. Sometimes just a faint whisper of it in the background of your mind, other times a huge roar overwhelming you. I can’t quite name it, it’s not something I felt before this. But the best description is that’s it’s a cross between anger and fear. Those two feelings combine to make one overpowering feeling… Shall we call it Fanger?

And it’s not just plain anger and fear, but outright rage and overwhelming terror, all rolled into one emotion. That’s Fanger.

It’s what you feel when you think about the Whys. And the What Ifs. It goes quite well with a nice serving of the phrase “It’s not fair.” (Add whatever extra words in that sentence you deem necessary).

Another strange feeling I have felt since beginning this cancer journey is called Wope. It’s a combination of Hope and Worry. It feels like juggling ten sharp swords while riding a unicycle on a tightrope which is maybe hanging over a net… Nobody really wants to be around you when you’re feeling Wope so it’s best to keep it to yourself.

Oh and then there’s that lovely feeling Anxhaustion, the overwhelming anxiety mixed up with absolute exhaustion, which is encountered usually about three hours before you can possibly go to bed, and often being especially high on the days before a scan or MRI. Anyone messes with a person feeling Anxhaustion is likely to get their head bit off.

Oh but wait, one of my favorites is Imdreadcipation, isn’t it yours too? That wonderful cocktail of impatience, dread and anticipation you feel while waiting for the test results, waiting to see the oncologist, waiting to get the chemo, waiting to have a scan, waiting, waiting, waiting…

Then again there’s that occasional bout of Nervanity, that combo of nervousness and insanity that often strikes suddenly, like right after your child has knocked over the tray of medicine in his struggle to get away from the nurse and you have to start the whole procedure over, and you are overcome with completely inappropriate laughter.

And let’s not forget Sorryuckyourself, often felt when people stare at you when you’re out in public. I’ve felt it when stopping quickly for groceries at the store after a chemo day and Elliot has an “I want a toy” tantrum. It’s a mix of feeling sorry for yourself and feeling like telling people exactly what they can do with their parenting advice.

But the very best, I guess, is Grelief, the mix of relief when you finally get good results and grief at the knowledge that your life will never be the same again

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Read all about this here on our feature page: Light it up Gold – September 2016

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