Pediatric Brain Tumors and Brain Cancer - Funding Is Key for Research and Support

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.

Pediatric Brain Tumors and Brain Cancer Alter the Definition of Normal

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.

The Brain Tumor Symptoms

The symptoms of brain tumor vary from patient to patient, and most of these symptoms can also be found in people without brain tumors. So the only way to know if you really have a brain tumor or not is to consult your doctor and get a brain scan.

Headache is the symptom that is common with 46% of patients with tumors. They described this headache in a different way and no reason is a sure sign of a brain tumor for many. Perhaps most people have headaches at some point in their lives, so it is not sure sign of brain tumors. You should talk to your doctor if your headaches are different than you've ever had, with nausea / vomiting, aggravated by bending or effort to go to the bathroom.

Seizures: This was the second most common symptom reported, with 33% of patients reporting a seizure before the diagnosis was made. Seizures can be caused by other things, such high fever, as epilepsy, stroke, trauma and other disorders. This is a symptom that should never be ignored, whatever the cause. In a person who has never had a seizure before, it usually indicates something serious and you should get a brain scan.

A crisis is a sudden and involuntary change in behavior, muscle control, consciousness, and / or sensation. Symptoms can vary from attack and sudden loss of consciousness total agitation of the violent shaking or slight shaking of a limb. A person can experience blurred vision, slurred speech or staring into space and doing other odd behaviors, while having a seizure. About 10% of United States population will experience a single seizure in their lives.

Nausea and Vomiting: As with headaches, these are non-specific - meaning that most people who have nausea and vomiting do not have a brain tumor. Twenty-two percent of our respondents said nausea / vomiting as a symptom.

Nausea and / or vomiting are more likely to look for a brain tumor which is accompanied by other symptoms mentioned here.

Vision problems or hearing: Twenty-five percent reported vision problems first. It is not easy if you have a problem with your hearing or sight, to be extracted. I have often heard that the eye doctor is the first to make diagnoses. When you look in your eyes, sometimes you can see the signs more. Intracranial pressure, because it must be studied.

Problems with the weakness of the arms, legs and facial muscles, and strange sensations in the head or hands: Twenty-five percent reported weakness in the arms or legs. Sixteen percent expressed feelings of weird and strange sensations in there head. This can lead to an altered gait, falling objects, falls, or asymmetric facial expression. These can be symptoms of a stroke. Sudden onset of symptoms is an emergency - you should go to medical emergencies. If you notice a gradual change over time, you should know.