Category: New Nominees

Vision

HIAS stands for a world in which refugees find welcome, safety, and freedom.

Mission

HIAS rescues people whose lives are in danger for being who they are.

• We protect the most vulnerable refugees, helping them build new lives and reuniting them with their families in safety and freedom.
• We advocate for the protection of refugees and assure that displaced people are treated with the dignity they deserve.

Guided by our Jewish values and history, we bring more than 130 years of expertise to our work with refugees.

The most hated word in the world of pediatric brain tumors is “rare.” “Rare” is the reason there is not enough research being done. “Rare” is the reason there aren’t drugs being developed. “Rare” is the reason there is so little funding. “Rare” is why our kids don’t have more options. The three facts below negate the claim of “rare”:

• Cancer is the number one disease killer of children in America.
• Brain tumors are the leading cause of cancer-related death in children.
• DIPG is the leading cause of death from brain tumors in children.

DIPG

DIPG is a brain tumor found in the Pons of the brain stem. Children are typically diagnosed between the ages of 5-7 with around 300-350 new cases per year in the United States. The median survival rate is 9 months from diagnosis, only 10% of patients survive 2 years from diagnosis. Long term survivors total less than 1%.

What makes DIPG so difficult to treat is not only its location (a very small area of the brain stem responsible for many critical bodily functions including breathing, swallowing, respiration, equilibrium and eye movement) but also the fact that it is “diffuse” (as opposed to looking like a solid mass or ball, it spreads out and mixes with healthy cells, it is sometimes described as looking “marbled”).

One of our doctors called it “the worst kind of tumor in the worst possible place.” The only standard of care to treat DIPG is radiation. Radiation is used to shrink the tumor giving temporary relief of symptoms but after a period of time the tumor typically grows back. As it grows, it cuts off those critical bodily functions until the child can no longer swallow or breathe and eventually succumbs. You cannot surgically remove DIPG and until very recently it was considered dangerous to even biopsy. This has resulted in very little DIPG tissue being available for researchers to study.

Perspective

As a parent of a child with DIPG it’s hard to describe the bewilderment and anger you feel when you are told the standard of care for DIPG has not changed in over 40 years. When you combine a lack of tissue to study with a severe lack of funding for childhood cancer, you end up with no progress.

Approximately 4% of the taxpayer-funded National Cancer Institute’s (NCI) annual budget is directed toward pediatric cancer. Not 4% for DIPG, not 4% for pediatric brain tumors… 4% for ALL of childhood cancer! Drug development is a huge issue for pediatric cancer. Drugs are developed almost exclusively for adult cancers and then simply “taken down” to treat pediatric cancers. Our children deserve better than this.

Vision

DIPG presents a great challenge. It is an extremely difficult and complex disease. We believe a cure will come from talented, passionate people working collaboratively. It will come from “Thinking outside the Box” and taking some risks. It will come from small breakthroughs happening in many different areas of medicine. The ChadTough Foundation is committed to funding this work.

Community. Clarity. Cure.

Seeking an end to hydrocephalus.

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain. Hydrocephalus affects over 1 million people in the U.S. alone. Approximately 1-2 babies for every 1000 births are born with hydrocephalus, but anyone can get hydrocephalus at any time through a brain injury or infection, among other reasons, or as part of the aging process.

In our effort to find a cure, HA pursues a three-pronged strategy.

COMMUNITY

Hydrocephalus means a lifetime of uncertainty for the families and individuals who are confronted with a diagnosis or who are affected by the condition. Naturally, they want to learn more, to understand what the condition entails, what treatments are available, and they want to know they’re not doing this on their own. We understand this, because many of us have stood in those same shoes. To help, HA gathers together valuable resources and connects individuals to larger communities that can provide support and understanding. By providing an online library and common space for those dealing with hydrocephalus, HA works to reduce uncertainty, advance the overall hydrocephalus community, and provide as much insight as possible into what remains an often challenging and bewildering condition.

CLARITY

Despite its broad prevalence, hydrocephalus remains a misunderstood and often hidden condition, and the general population largely remains unaware of the breadth and depth of the impact of hydrocephalus. This lack of clarity complicates diagnosis, and not surprisingly, it also results in limited funding. For example, while hydrocephalus is 30x more common that Cystic Fibrosis, it receives only 1/13th of the federal research money.

HA works to educate national and state policymakers, the medical community, and the general population about the nature and extent of hydrocephalus, and to focus attention on the condition and the legislation/attention needed for individuals to overcome challenges. Our Medical Advisory Board contains leading neurosurgeons, neurologists and other medical professionals and scientists to ensure that we are providing the most current and reliable information. We work to help others see the condition for what it is, so that it can receive the consideration it deserves.

CURE

Today, no cure for hydrocephalus exists, and the primary treatment – the insertion of a shunt into the brain – was developed fifty years ago and suffers from one of the highest failure rates of any surgical treatment. By focusing attention and research monies, HA works toward the ultimate end: a final cure to hydrocephalus.

Little is known about the causes of hydrocephalus, but recent research offers hope that a cure is indeed possible. Already we are seeing improved diagnostic techniques. New valve designs are improving the efficacy of the shunts used to treat patients. New treatment options have opened up the possibility of a life without a shunt for some individuals. Studies in biomarkers and genetics are providing promising insights into how we might prevent the condition from occurring. This is the power that research has, and every dollar matters. The more research we can fund now, the better the scientific foundation upon which future research will build. HA supports a Strategic Research Initiative that focuses on work that will truly advance our understanding of the condition, and with that, discover its causes, improve its treatment, and help us see an end to hydrocephalus.