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it will not happen without additional funding and a targeted focus on this specific tumor type.

THE BRUTAL CURRENT REALITY

Any tumor in the brain wreaks havoc on the physical and mental systems of the body and often leads to numerous complications, including death. PLGA’s are no exception. The reality, however, is that death may not be much worse than the punishment and torture these kids and their families are subjected to in treating this kind of tumor with current available therapies.

Many PLGA’s are inoperable due to location and the vital areas of the brain engrossed by the tumor. To surgically remove these tumors would mean irreversible damage to important healthy tissue which would lead to a long list of devastating, permanent disabilities and even death itself. Even the most advanced and targeted radiation capabilities currently in use are not precise enough to spare permanent damage to the young and developing brains of these children.

Unfortunately, this reality leaves us outdated and ultimately ineffective chemotherapies as the best available option today. The chemotherapy drugs currently being used to treat these tumors are over 20 years old and were not even developed for this kind of cancer. Worse yet, they are not very effective in treating this tumor type…the best hope with these chemo drugs is that the tumor will temporarily stay the same size or shrink a little. The tumor will never go away with current treatments available and unfortunately there is a stronger chance than not it will continue to grow slowly and do devastating damage in the process. If the tumor cannot be controlled, or even if it can, these kids are in for serious side effects from BOTH treatment and the tumor itself:

• loss of vision
• hormonal issues
• extreme weight loss problems
• speech issues
• mental deficiencies
• blood count and immune system deficiencies
• sterility
• emotional problems
• physical changes and deformities
• and yes…death

The list is long and horrible. Not to mention the constant trips to doctors and hospitals to be poked, prodded, examined, tested, and put through the ringer like some kind of lab animal or alien abductee. Their lives and the lives of their families are so far from what a normal child should be experiencing it is nothing less than tragic and incredibly unfair. This reality hits us all too often and fills us with almost overwhelming despair for the path our family and our baby girl’s life has taken. This is the opposite of what you dream for your child. These are perfectly normal kids who have their lives changed forever by our inability to gently and effectively treat these tumors and provide them with a 100% cure…a chance to pursue their dreams, to strive for greatness, a chance for a normal life again.

There is, however, strong evidence that with your support we can change the current, brutal, reality.

HOPE

Historically, the research on PLGA’s specifically has been nonexistent. No one was raising money solely for this tumor type. Because the money did not exist, the best scientists and researchers in the world were not drawn to this cause. With little to no targeted focus on this particular kind of tumor, little to no progress was made in the last 20 years (unlike tremendous breakthroughs and cures in many other forms of childhood cancer). Through the recent efforts of an organization called the PLGA Foundation (a non-profit 501c3 made up of family and friends of children with PLGA’s) some progress has been made in getting the most brilliant minds and institutions in the world working on this issue and funding research and trials to rapidly advance promising treatment alternatives. With more funds, we are poised to make faster advancements and breakthroughs in the search for better therapies and a cure.

There is currently what could be considered a “four-pronged” attack underway to drastically increase the pace of research and results:

1. Fundraising. Driven mostly by family and friends of children with these tumors, the goal is to get grass root fundraising efforts up and running in communities all over the country. We need your help in the form of donations AND spreading the word and helping raise money for this cause. We realize it is hard to be as engaged as we are in this challenge, but we ask you to put yourself in our shoes and imagine your own child or family member’s life depending on it…as the fate of our family and our daughter Hailey does (and thousands like us around the world). We ask you to find it in your hearts to donate generously AND enlist as many people as you can to do the same.
2. Funding promising research. Once money is raised, the goal is to spend it on research to rapidly advance results. Step one is determining molecular structure (the genetic “make up”) of these tumors. Valuable studies are underway in this area. Once it is determined what these tumors are made of, why they develop, what feeds them, how they grow, etc. we give ourselves a realistic chance to find a tailored way to control and kill them with gentler, more effective therapies that already exist for other purposes, or the advancement of up and coming treatments like (but not limited to):

   Biologic Therapies -
   www.oncolink.com/treatment/article.cfm?c=16&s=117&id=335

   Microbeam Radiation Therapy -
   www.bnl.gov/bnlweb/pubaf/pr/2001/bnlpr070201.htm

   Blood Brain Barrier Disruption -
   ubs.acs.org/subscribe/journals/mdd/v05/i06/html/06filmore.html www.research.va.gov/news/press_releases/cancer-113005.cfm

   Focused Ultra Sound -
   en.wikipedia.org/wiki/High_intensity_focused_ultrasound

3. There are also small lobbying efforts taking place in Washington D.C. to draw political attention to this tumor type and include it in broader cancer related funding and research practices. In addition, efforts are underway to attempt to gain more “national” public exposure for this kind of tumor, including finding a famous, reputable “spokesperson” to support and accelerate the cause.
4. Lastly, and maybe most importantly, the people at the PLGA Foundation are facilitating an unprecedented effort to bring the most brilliant minds in the research, scientific and medical communities together to network and collaborate on promising possibilities to beat this tumor type. Check out the summary of a recent workshop facilitated by the PLGA Foundation, the first of its kind… PLGA Workshop Executive Summary. Collaboration is a key concept of our strategy. Historically, disease research has been very territorial and secretive from one institution or researcher to another. We will simply make advances MUCH faster if these institutions are working together to share information and results.

ALL OF THESE EFFORTS ARE IN RELATIVELY EARLY STAGES AND NEED ADDITIONAL RESOURCES AND FUNDING TO LEAD TO BREAKTHROUGH AND CURE. Advancement is very possible, but will not be made without your help.

HOW MONEY WILL BE INVESTED

Nearly 100% of your donations will be funneled to the PLGA Foundation (an organization we are now an active part of) and go directly to PLGA specific research and testing to rapidly advance results towards finding kinder, gentler treatments, and a 100% cure. We are investing in the most brilliant minds in the field at some of the most prestigious and respected institutions in the world and our reputation amongst the science and research communities is growing, drawing more and more interest in our cause. Updates on projects funded and results will soon be posted on teamhailey.org and the fightPLGA.org websites.

When considering whether to invest in a project (either from a pool of RFP responses or proposals that come to us outside of the formal RFP process) we utilize a scientific review process using a group of respected science, medical, and research professionals to help us invest your donations in the most efficient and effective way possible. Above all else, however, it is critical that any project we invest in be run by individuals or institutions that are willing to collaborate and share data with other institutions, supporting our belief that collaboration is the fastest way to results. Other key criteria are that funded projects must have a direct impact on children, and must show the potential to help children with low grade astrocytomas specifically.

HOW YOU CAN HELP

We ask you to PLEASE forward this website on to as many people as you can think of and ask them to do the same.

Again, we also plead with you for your financial support in the quest to save our daughter’s life and the lives of thousands like her around the country. This is a cause that will make a serious difference in the lives of the innocent children and families affected by this horrible disease. It will help us more quickly reach a point where hope, relief, and cure overtake the fear, pain, sadness, and struggle we currently battle every minute of every single day.

Please also click on the “Join the Team” button on this website to find out several other ways you can contribute.

Please feel free to contact us at any time to ask questions or discuss ideas you may have to help this cause. We can be reached at

JavaScript must be enabled to display this email address.

or by phone at 920-915-1892 (Brian) and 920-707-4367 (Shannon). Your suggestions, comments, and support are always welcome.

We are faced with a horrific and daunting challenge, but it is one we will not and cannot back away from. We have no choice but to succeed…the health and happiness of our family literally depend on it. We sincerely thank you for supporting us on this journey and wish nothing but love, health, and happiness to you and yours.

Love and Gratitude,

Brian, Shannon, Faith, and Hailey Meltz