Cancer du cerveau

Pediatric brain tumors and brain cancer, while rare, are considered to be the deadliest of all childhood cancers. While the incidence rate may be relatively low, with approximately 3,400 new cases diagnosed annually in the United States, the mortality rate of children with these types of cancers is significantly higher than other childhood cancers and diseases. Roughly one-third of these kids will not survive beyond five years.

However, it is encouraging to note that, as a result of advancements in research and treatment methods, there have been noticeable decreases in overall cancer death rates since the early 1990s, with an estimated 25,000 survivors currently living in the U.S. Although "survivorship" for these kids comes with its own lingering effects, such as cognitive damage, physical challenges and social isolation, the research that is taking place today will hopefully, someday help to minimize these effects, and allow these survivors to live longer, healthier lives.

Hope for the children and families who face this dreadful disease comes from the tireless efforts of many non-profit organizations, research foundations, hospitals and other pediatric medical institutions who are dedicated to finding the cause, and ultimately, the cure for this deadly invader of children. A few of the more notable milestones of late include:

• The creation of a tissue bank consortium, a collaborative initiative involving the Children's Brain Tumor Foundation and a group of researchers at several leading pediatric oncology hospitals nationwide. The bank will enable researchers to obtain samples of brain tumor tissue that can be characterized, analyzed and used to evaluate treatments. The results can then be documented in a database that can be shared with pediatric cancer facilities across the country.

• The publishing of a landmark study of medulloblastoma*, a type of brain tumor typically found in children. The study team found that the number of mutations in pediatric medulloblastoma tumors is five to ten times fewer than in adult medulloblastoma tumors, which suggests that, compared to adult tumors, pediatric tumors may respond better to drugs that target the genes and pathways altered by mutations that drive cancer progression.

Pediatric brain and spinal cord tumors are difficult to diagnose because their signs and symptoms may mimic those of other disorders, and vary according to the exact location of the tumor. Once a diagnosis is made, successful treatment is also difficult because there are so many different kinds of brain tumors and cancers, and their precise causes are unknown.

Research holds the key to quicker, more accurate diagnoses and subsequently, better treatments. While progress is being made on a number of research platforms, it continues to be challenging for several reasons:

• There are many different kinds of children's brain and spinal cord tumors, which has stymied research as investigators face the challenges of collecting and analyzing tissue, as well as the ethical issues posed in treating children.

• Because the disease is rare and tissue samples of tumors are small, it takes time to test and validate new treatment options, and there is currently not an adequate database for recording and sharing this information.

• Doctors and researchers are dealing with a growing child's brain and body, so they must first ensure they avoid harming the child.

• Funds for research and treatment options are limited, due to the relatively low rate of incidence, compared to other childhood cancers and diseases.

As any research investigator would attest, much work has been done, much progress has been made, but it is not enough. It is never enough. The efforts will continue, and the unshakable commitment of so many will stand strong until the statistics dwindle from 3,400 to 0.

This article was written for the Children's Brain Tumor Foundation; Joe Fay, Executive Director. For more information, or to make a donation, please visit http://www.cbtf.org/. Contact Joe Fay at jfay@cbtf.org or 800-228-4673. This article is free to be reprinted as long as the bio remains intact.

*"The Genetic Landscape of the Childhood Cancer Medulloblastoma," Science, published online Dec. 16, 2010.

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For most of us, today will begin like any other day. We'll sip our coffee, skim the morning paper, drop the kids off at school, and perform the normal rituals that make up our daily lives. The good, the bad, and yes, even the somewhat ugly; we'll tackle it all with confidence and a sense of comfort, knowing that tomorrow, as routine as it may be, we'll get to do it all over again.

But, for several families across America, today will be different. Today will be life-changing.

Today...

• Nine families will learn their child has a brain or spinal cord tumor;
• Three families will mourn the loss of their child to this dreadful disease; and
• Six families will transition to survivorship.

Each year, an estimated 3,400 children in the United States are diagnosed with a brain tumor or brain cancer. Approximately one-third of these children will survive no more than five years, making this the deadliest of all childhood cancers. For the families of these kids, there will never be another "normal" day. Their days will now be filled with medical appointments, treatment options, and learning how to operate within a new definition of "normal."

Thankfully, hope springs eternal. The survival rate for children with brain tumors and brain cancer has increased significantly over the past twenty years. Advancements in research have resulted in better treatment methods, improvements in the quality of life and the long-term outlook for these young patients. However, survival does bring with it an all-new set of unique challenges. Treatments can cause damaging late effects on survivors; effects that range from cognitive impairment, to physical challenges, to social isolation.

Collaborations between nonprofit organizations, research foundations and leading medical institutions have proven to be instrumental in the fight against these childhood cancers. By joining forces, these groups are able to connect the best of the best to keep research moving forward, raise public awareness, and provide support to the patients and families who need it.

Several non-profit organizations have been established over the years to provide help to families who find themselves on this new and very difficult life path. Most of these groups offer resources for education, assistance with medical and financial services, and much-needed emotional support through a variety of family outreach programs and special events.

These nonprofit organizations work tirelessly in their battle to make pediatric brain tumors and brain cancers a disease of the past. They are continually searching for research partners, corporate sponsors, and private foundations to help support ongoing research. Individual donations are also critical to the success of these organizations. While much work is being done, and progress is being made, the need to raise awareness, fund research, and provide support is ongoing.

A quick Internet search and a few simple clicks of the mouse will land you on the website of one of these dedicated, nonprofit organizations. Once there, you'll likely find an abundance of valuable information, along with resources and opportunities to help. Why not spend a little time today learning more about this devastating disease? Perhaps, make a donation, or even sign on as a volunteer. Not only can you help to redefine "normal" for these kids and their families; you might just alter your own idea of "normal" as well.

This article was written by Joe Fay, Executive Director of the Children's Brain Tumor Foundation. For more information, or to make a donation, please visit http://www.cbtf.org/. Contact Joe Fay at jfay@cbtf.org or 800-228-4673. This article is free to be reprinted as long as the bio remains intact.

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Every day, across America, people are talking about the progress being made in medical research, or the support provided to patients and families affected by a devastating disease or illness. One thing that often gets lost in these conversations is the issue of money. Research can only move forward if there's funding to support it. Nonprofit organizations and other support groups operate primarily from donations; and even fundraising activities require a budget of some sort. None of these can happen without money.

And, somewhere out there, right now, a group of parents is having that very conversation about the deadliest of all childhood cancers-pediatric brain tumors and brain cancer. What's the latest in research? What kind of support is out there for the kids and families? Why isn't more being done, and faster? It is the mission of the nonprofit organizations that support this worthwhile cause to provide answers to these questions, and they understand that the answers come through proper funding.

Research

Research on the causes and cures of pediatric brain tumors and brain cancer is ongoing, but often progresses at a slower rate than desired. There have, however, been some recent successes in this area of research, including the creation of a tissue consortium, and the publishing of a major study of medulloblastoma, a type of brain tumor typically found in children. ("The Genetic Landscape of the Childhood Cancer Medulloblastoma"; Science, published online Dec. 16, 2010.)

Support

Through a variety of programs and services, most nonprofit organizations work to meet the needs of these young patients and their families. Services such as support groups and various family events, as well as assistance with a variety of issues relating to care, treatment, and financial aid give these families the sense that they are not alone on this difficult journey.

Awareness and Education

Anyone who owns or operates a business understands the necessity of marketing. Awareness of the product or services offered is critical to the success of that business. Of course, successful marketing requires a sufficient source of funds to "get the word out."

In that sense, nonprofit organizations are no different than any other business. In order to promote awareness of pediatric brain tumors and brain cancer, there must be a solid marketing plan in place. How else will the average person learn that every day, across this country...

• Nine families will learn their child has a brain or spinal cord tumor;
• Three families will mourn the loss of their child to a brain or spinal cord tumor; and
• Six families will transition to survivorship.

Funding for the ongoing research and essential services provided by the nonprofit groups comes primarily from a mix of events, direct response, online fundraising, and major and planned gift solicitation. For the most part, events constitute the predominant source of funds to back these activities.

With adequate funding, progress can continue that will improve the treatment, quality of life and long-term outcomes for children with brain and spinal cord tumors.

How does the old saying go? "No gift is too small; no kind gesture goes unnoticed." Contact a nonprofit organization today to find out how you can help in the fight against pediatric brain tumors and brain cancers.

This article was written by Joe Fay, Executive Director of the Children's Brain Tumor Foundation. For more information, or to make a donation, please visit http://www.cbtf.org/. Contact Joe Fay at jfay@cbtf.org or 800-228-4673. This article is free to be reprinted as long as the bio remains intact.

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Scientific research is the key component in the battle to cure pediatric brain tumors and brain cancer. Its success points directly to the value of collaborations among researchers, medical facilities, nonprofit organizations and even private philanthropies. These groups often come together with a common purpose, and join forces to work towards a single goal - finding a cure for this terrible childhood disease.

There are many such collaborative efforts taking place in the area of pediatric brain cancer, which is considered to be the deadliest of all childhood cancers. For instance, there is the newly established, Brain Tumor Tissue Consortium, involving the Children's Brain Tumor Foundation and researchers at several leading pediatric oncology hospitals nationwide. This consortium enables researchers to obtain samples of brain tumor tissue that can be used to evaluate treatments. The results can then be documented in a database that can be shared with pediatric cancer facilities across the country.

The result of another such partnership recently came by way of a landmark study of medulloblastoma*, a type of brain tumor typically found in children. (*"The Genetic Landscape of the Childhood Cancer Medulloblastoma," Science, published online, December 16, 2010). The large, multi-center study defines the genetic landscape of this cancer, and holds intriguing clues to gene changes on signaling pathways that may become fruitful targets for future therapies. This is a very significant and hopeful finding, and one that researchers, doctors and parents alike are celebrating.

There are a number of other, ongoing research programs that also center on establishing better treatment methods, reducing the adverse side effects of these treatments, and increasing the number of survivors. While progress is being made, it continues to be challenging for a number of reasons:

There are many different kinds of children's brain and spinal cord tumors, which has stymied research as investigators face the challenges of collecting and analyzing tissue;Because the disease is rare and tissue samples of tumors are small, it takes time to test and validate new treatment options; andFunds for research and treatment options are limited, due to the relatively low rate of incidence, compared to other childhood cancers and diseases.

While the incidence rate of pediatric brain tumors and brain cancers may be relatively low, with approximately 3,400 children diagnosed each year, nearly one in three of these children will not survive more than five years. And, those who do survive will likely suffer damaging, long-term effects from the very treatments that saved them. However, due to the dedicated research that has taken place over the last twenty years, there have been noticeable decreases in the overall cancer death rates. The research taking place today will hopefully, someday help to minimize the side effects and allow these survivors to live longer, healthier lives.

We read about breakthroughs in medical research every day, and when we do, we applaud the researchers, and rejoice for those who might benefit from the results. We celebrate the success of the research programs, as we should; but it's important to understand the efforts behind the breakthroughs. It requires unwavering dedication from the researchers, doctors and other medical professionals, tremendous commitment from the nonprofit organizations that help promote the cause, and an extraordinary sense of charity from the financial supporters. Talk about a collaborative effort! There likely would be no breakthroughs; no success stories to celebrate were it not for the alliances formed by these remarkable groups of people.

To learn more about current research efforts in the area of pediatric brain cancer, make a donation, or find out how you might become a partner in one of these collaborative programs, contact one of the many nonprofit organizations or medical research facilities focused on bringing an end to this dreadful disease. Many together can accomplish more than one, alone.

This article was written by Joe Fay, Executive Director of the Children's Brain Tumor Foundation. For more information, or to make a donation, please visit http://www.cbtf.org/. Contact Joe Fay at jfay@cbtf.org or 800-228-4673. This article is free to be reprinted as long as the bio remains intact.

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