Last week almost 350 advocates from 40 states participated in 222 congressional meetings bringing the voice of the Childhood cancer community to Capitol Hill.

On September 23, 2024 the U.S. House of Representatives passed the Give Kid a Chance Act.

The Give Kids a Chance Act ensures that kids with cancer will have studies of combinations of new cancer drugs. This is important because finding new combinations of cancer drugs is the best way to find new cures for kids.

The Give Kids a Chance Act also the Creating Hope Reauthorization Act, reauthorizing the priority review voucher program, an incentive program that has resulted in over 60 new drugs for seriously ill kids. Vouchers sell for about $100 million.

The Innovations in Pediatric Drugs Act is also part of the Give Kids a Chance Act, increasing funding for pediatric clinical studies at the National Institutes of Health and imposing monetary penalties when companies fail to complete their required pediatric drug studies.

You asked Congress to help kids with cancer and Congress just did.

We have more steps to go: passage of the Give Kids a Chance Act in the Senate and then signature by the President. But we have reached a critical milestone.

Let’s get back to work. Let’s give kids with cancer hope. Let’s give kids with cancer a chance.

On  Giving Tuesday, we’ve always known that generosity is a source of boundless joy. The act of giving, driven by empathy and compassion, brings immense happiness to the giver, the recipient, and anyone who witnesses that act of generosity. It’s a beautiful cycle that leaves us with one resounding truth: when something fills your heart with this much joy, you can’t help but want to do it again.

As we approach this year’s GivingTuesday, we invite you to reflect on how you can center joy in the design of your campaigns. Let’s embrace the happiness that giving brings and inspire others to do the same. Together, we can create a global activation that reaffirms that joy-driven giving is a force for positive change. Share your stories, inspire your communities, and let’s make this GivingTuesday a celebration of the pure, unadulterated joy of giving. Please help us save the lives of children with cancer.

The Give Kids a Chance Act was reintroduced to the US House of Representatives today by Representatives Michael McCaul and Anna Eshoo.

Nancy Goodman, CEO of Kids v Cancer said, “Adults with cancer get new combinations of targeted therapies because combinations are the best chances for cures. Why don’t children have the same chances?

“The Give Kids a Chance Act will save kids’ lives. It won’t cost taxpayers a dime. It is a bipartisan bill and passed in the House last year. This should be easy to pass, right?”

“Children should be given the same opportunity as adults to beat cancer, full stop,” said Rep. McCaul. “It has been the highlight of my career to fight for a better future for children with cancer, and the Give Kids A Chance Act is another large step in the right direction. I’m proud to re-introduce this bill, which would help save lives for years to come.”

“Today, cutting-edge cancer treatments involve a combination of drugs to improve health outcomes for adults, but there is limited research on how these therapies can help children,” said Rep. Eshoo. “Our legislation will authorize the Food and Drug Administration (FDA) to direct drug companies to conduct pediatric cancer trials on combination therapies. We’ve come long way, and this bill will ensure children have access to the newest and most effective treatments to treat and cure cancer.”

Nancy Goodman continued, “The Give Kids a Chance Act amends the RACE for Children Act, passed by Congress in 2017. Whereas the RACE Act provides that new targeted cancer therapies be studied in children’s cancers, the Give Kids a Chance Act provides that combinations of targeted cancer therapies be studied in children’s cancers.

“It is critically important for therapies to include combinations of new drugs because often single-drug therapies, even of new drugs, do not work.”

“The most powerful voices of pediatric cancer are the kids themselves.  Over 200 kids – patients, survivors and siblings – have met with Congressional offices as part of Kids v Cancer’s Climb the Hill days to discuss their experiences of pediatric cancer. Kids will continue to ask Congress to pass the Give Kids a Chance Act

As all the children go back to school we congratulate the survivors, honor those still fighting and remember those who lost their battle. Better therapies are urgently needed.

A Day of Gold

Every year, February 15 is known as International Childhood Cancer Day – a day to increase awareness of pediatric cancer, support families in battle, remember loved ones, and salute survivors. The gold ribbon of pediatric cancer beautifully symbolizes the personal strength needed to endure diagnosis and treatment and the preciousness with which we hold all our children. Today, we remember our beautiful Taylor, applaud her determination, appreciate all she did for others while fighting her own battle, and proudly wear our gold ribbons to symbolize what a treasure she was to her family, friends, and the pediatric cancer community. Her legacy glistens.

At 11 years old, Taylor recognized everything International Childhood Cancer Day is about: the need for better diagnoses and treatments; the need for greater support for sick children, survivors, and their families; and the need for better and more equitable access to treatments around the world. Today, the incidence of childhood cancer is increasing and so are survival rates. But the battle is a brutal one and the availability of treatments depends too much on the family’s location and economic circumstances.

Taylor started tay-bandz to declare war on pediatric cancer and take our government to task for vastly underfunding childhood cancer research. Today, the Taylor Matthews Foundation continues her work by funding precision medicine and other research that can treat children everywhere and immediately, by seeking legislative change, and by breaking bureaucratic logjams that keep promising therapies from reaching treatment centers.

Taylor’s determination was limitless: to fight cancer, not be defined by it; to live meaningfully; and to make a difference. We are proud to carry her legacy. On this International Childhood Cancer Day, we stand with the international pediatric cancer community in its commitment to advance cures and transform care. We honor victims, survivors, and families everywhere and say loud and clear that we will never stop in our quest to see all our beautiful children live long, healthy, productive lives.

We have been honored with a Top-Rated Award for 2021 from GreatNonprofits! We appreciate all of your contributions! https://greatnonprofits.org/org/tay-bandz-inc-the-taylor-matthews-foundation

In 2012, President Obama proclaimed September as National Childhood Cancer Awareness Month to bring awareness to pediatric cancer, which remains the leading cause of death by disease for children under the age of 14.

See how we’re treating and defeating childhood cancer, in our research section, and show your support by going gold. The gold color and a gold ribbon are symbols for cancer affecting children.

Dear Friends,

As I write to you, I struggle to make sense of what has happened in the last 90 days or so. A global pandemic has killed almost 400,000 people globally, over 100,000 in the US alone. Most of our economy closed itself down and we were all confined to quarters. Over 40 million people in the US are unemployed and they are the people least able to afford it.

And then we all watched in horror, the death of George Floyd, in a senseless display of force by the very people tasked with upholding the law and protecting us. The protests that followed and continue each night with some peaceful protest that is heartening  and some horrible scenes of violence and destruction, have made me question how we got here and why we haven’t addressed the issues that were laid bare in the aftermath. It has made me ask whether I have done enough personally to be part of the solution and what I can and should do now to make a difference. Many of my friends feel the same way. Perhaps you have asked yourself the same question?

There is an unfortunate common theme between the pandemic and one of the sources of anger in the black and brown community. The recent gains in employment and unemployment in the black and Hispanic community have been undone almost overnight. Along with  their paychecks they lost their health insurance, if they had health insurance to begin with, since black and brown Americans are far less likely to have health insurance.

Additionally The pandemic hit people of color in the US much harder than it hit the white population. There is ample evidence that the cause of the disproportionate morbidity and mortality is the high levels of underlying medical issues and a lack of proper health care in poor communities. Everything from nutrition to primary care, health insurance and health education contribute to the issue.

As I think about what my contribution to the solution will be in the future, I want to thank you for what you have already done-perhaps without even realizing it. Let me explain.

You all know that the Taylor Matthews Foundation (tay-bandz) is committed to saving the lives of children with cancer through research and novel treatments-all children. Most of our grants have gone to research at Columbia University Medical Center and most of that has focused on precision medicine. All of the 2019 and 2020 grants to Columbia  went to cover the cost of sequencing the tumors of relapsed kids or those who didn’t respond to treatment. Insurance companies barely reimburse or don’t reimburse at all-assuming you have insurance. It can literally be the difference between giving a child the sequencing that may save their lives or not based on ability to pay.

What you may not know is that Columbia, despite being the more prestigious medical school and more highly regarded hospital versus it’s downtown sister hospital, has funding challenges that reflect the demographic of its neighborhood. Their patient base is highly disproportionate in terms of the socioeconomic mix of patients. Much of the patient load is a function of where the hospital is located-in and near poor and predominantly minority neighborhoods. The result is a very high percentage of patients who are poor, uninsured or underinsured. They are largely people of color. While you and I would do the sequencing for our children regardless of reimbursement, for many of Columbia’s patients that is not an option. The reason that so many poor and minority children are getting sequenced is you! Columbia treats each child regardless of the ability to pay because of tay-bandz. And you are tay-bandz.

So besides saving kids in real time, you are taking a small bite out of a big disparity in healthcare for the minority community. I can’t tell you how proud I am of what tay-bandz is doing for kids but more importantly I can’t thank you enough for the years support you have given tay-bandz.

To all of you, THANK YOU from the bottom of my heart. You are making the world a little brighter.

With gratitude,

Sue Matthews

As we all know, childhood cancer doesn’t pause during a pandemic. It is during times like these that it is especially important that we work together to find creative ways to fund vital pediatric research.

Please show your organization’s support for pediatric research by signing on to the Gabriella Miller Kids First Research Act 2.0. Simply complete a brief online form that takes less than a minute.

As of January 2020, the USPS Office of Stamp Services has officially accepted The #Americanchildhoodcancerorganization (#ACCO) application for the childhood cancer semipostal stamp. The next step towards finalizing the USPS approval is demonstrating America’s support for this stamp from those who share our passion for our nation’s children diagnosed with cancer.

The Taylor Matthews Foundation, along with many other pediatric cancer foundations and advocacy groups, was invited to join a conference call regarding President Trump’s childhood cancer initiative. In the State of the Union address, the President announced his budget request to Congress to include $500 million over the next ten years to fund pediatric cancer research, equating to an increase of $50 million a year.
Admiral Brett Giroir, M.D., Assistant Secretary of Health and Dr. Ned Sharpless, Director of the National Cancer Institute lead the call. According to Dr. Sharpless, these funds, if allocated correctly, could save the lives of children with cancer.

Dr. Sharpless proposed directing the funds to develop a database so that new treatments for pediatric cancer can be shared with oncologists nationwide in the quickest way possible.

Knowledge is critical. The Taylor Matthews Foundation is a strong advocate for development of the database and has been for years.

Join us in saying #NoMoreLoss: The World Health Organization’s goal is to bring the global survival rate of childhood cancer up to 60% by 2030. #ICCD2019

2,500,000 children die every year with serious health-related suffering. 98% of these children live in low- and middle-income countries. #ICCD2019 #NoMorePain

The global incidence of childhood cancer is increasing. As much as 80% of childhood cancer is diagnosed too late, when treatment is not available or does not exist. #ICCD2019 #NoMoreLoss

The World Health Organization and global partners, including St. Jude Children’s Research Hospital, have announced a  new global initiative to address the disparity between childhood cancer survival in low and middle-income countries versus high-income countries was announced.

Each year, more than 300,000 children 19 and younger are diagnosed with cancer. About 8 in 10 of these children live in low- and middle-income countries where their survival rate is often near 20%. This is a stark contrast to higher-income countries, where cure rates exceed 80% for many common childhood cancers.

Childhood Cancer Summit 2018:

As described below we have made many advances in childhood cancer. BUT it is not enough!

At the summit a teenager, with cancer, asked Dr. Ned Sharpless, The Director of The National Cancer Institute, the famous 4% question? She asked why the percentage of NCI dollars for pediatric cancer has not increased above 4%? He responded saying that the actual dollars allocated to pediatric cancer have increased in proportion to the increase in NCI dollars but had no answer to the 4% question other than to revisit it again next year.

OUR KIDS DESERVE MORE!

The STAR Act was signed into law in June 2018. The STAR act is the most comprehensive childhood cancer act ever enacted.Now, we need Congress to fund it. We are asking for $30 million per year for 5 years.During the caucus a huge round of applause was heard throughout the halls of the Capital as Rep. Michael McCaul announced that he had literally just received notice that The Senate approved funding of the STAR Act and that it was on its was to the House of Representatives.

The RACE for Children Act was signed into law in August 2017.

It requires companies developing targeted cancer drugs for adults to also develop those drugs for children with cancer.By August 2019 the FDA is required to publish guidance on the Race Act.By August 2020 the requirements of the RACE Act will be enforced.Although passage of the RACE Act will change the landscape for children with cancer it will not be enforced for 3 years after it was passed.

Gabriela Miller Kids First Act:

Gabriela was a girl who died of cancer in 2013. While she was ill she was an activist and raised support for research. In 2014, Congress appropriated $12.6 million for research for each of the first 4 years. The 4 years have passed. Advocates are asking Congress to fully fund the research act for each of the 10 years, as originally authorized and to ensure that the funds are dedicated specifically to pediatric cancer.

The Kids First Research Act 2.0The Act proposes to redirect approximately $320 million in existing, reserved and unused government funds from the Presidential Election Campaign to a research fund to be used to develop a comprehensive shared data resource to support the development of computational tools to analyze large complex genomic and clinical databases.No action has been taken since the Act was introduced in the House in April 2017.

This post is part of #GivingTuesday’s #WomenWhoGive series, which celebrates women who are making a difference in their communities.

Sue Matthews, President,Taylor Matthews Foundation

What inspired you to start giving?

My then 11-year-old daughter, Taylor, founded TMF when she was diagnosed with cancer. The shock of diagnosis gave way to the reality that pediatric cancer is devastatingly underfunded by the US government. Taylor was horrified that thousands of children could be suffering from cancer and yet their cries for help were being ignored. Taylor was determined to make a difference. Less than a month after diagnosis, she founded a 501 C 3 non-profit organization whose sole mission is to raise awareness and fund pediatric cancer research. Taylor always said, “Mommy, if I can save one live it would all be worth it.”

What does giving mean to you? Why do you continue to give your time, talents, money, or more to your community?

Giving is a gift. Giving gives my life meaning and purpose. Giving provides me with the opportunity to change the course of someone’s life. There is nothing more gratifying and rewarding then helping to save a child’s life.

The loss of my daughter has given me the drive, dedication and determination to continue to help other children with cancer. I get my strength from her. As I awake every morning and think of her I am reminded of why what I do is so important. I will never falter in my commitment to children with cancer.

I continue Taylor’s legacy of wanting to help other’s through the Taylor Matthews Foundation and through the book I wrote, with the help of my sister, “Paint Your Hair Blue… A Celebration of Life with Hope for Tomorrow.”

Paint Your Hair Blue takes the reader through the heartwarming tale of heroic courage and, devastating blows that characterized Taylor’s odyssey through the underfunded world of pediatric cancer. This book is an inspiring tale of the power of love and determination. It will empower the readers, no matter the circumstance, to embrace life and take control of their own destiny and face fears with strength, fortitude and confidence while living

Additionally my memoir provides support and specific advice for other parents confronting cancer as well as anyone going through a cancer diagnosis, a chronic illness, or caring for someone who is.

What would you tell others who are looking to start giving back? Share a piece of advice will help them get started.

Whether you are volunteering or donating funds pick a cause that resonates with you, one that you have passion for. Your commitment to your charity of choice is only sustainable if you believe in what they are doing and how they are executing their mission. Consider your own time commitment.

Research the charity; look at their tax return to determine how funds are allocated between administration costs and grants actually given. Determine if your goals are the same as those of the charity.

Please share a favorite moment or story from when you volunteered or donated to an organization.

When TMF raised its first $100,000 Taylor was happy because my husband and I were happy. She didn’t understand what all the zero’s meant. It was as if I gave Taylor $10 to get a slice of pizza.

Childhood Cancer STAR Act, passed through the House of Representatives On May 22nd. It had already passed the Senate in March 2018.  It now goes to the White House to be signed into law!

However, we still need to advocate for funding of the Act which requires $30 million a year over the next 5 years.

Lobbying Days

Under the umbrella organization Alliance for Childhood Cancer, hundreds of pediatric cancer advocates banded together last week in Washington DC. Along with fellow advocates, representatives from the Taylor Matthews Foundation lobbied Congress to pass legislation that addresses pediatric cancer research funding, new treatment protocols, and survivorship issues.

Currently at issue is the Survivorship, Treatment, Access, and Research (STAR) Act. STAR passed unanimously in the Senate this past March and has the support of 364 Representatives, but has not yet been brought to a vote in the House. Once passed, the Act will require funding of $30 million per year for five years. This act focuses on increased governmental funding, enhanced access to not-yet-approved adult drugs, as well as adult approved drugs and funding and research for the issues childhood cancer survivors face later in life.

It was both profoundly sad and deeply empowering to be among so many parents who have faced the heartache of a sick child. The presence of grieving and fighting families reminded me that pediatric cancer is a national problem and one that must be addressed aggressively and now. We lobbied for Taylor, other children that have lost their battle, future generations of children, and families in battle now.

The STAR Act could mean the difference of a lifetime to children fighting pediatric cancer. Please help us help families in battle by contacting your legislators and urge them to pass and fund the STAR Act. You can find the names and contact information for your Representatives here. They need to hear from constituents like you about how important this issue is.

All our children deserve a bright, healthy, and productive future. Thank you for helping us help sick children fight the battle of their lives.

The Childhood Cancer STAR Act – the most comprehensive childhood cancer bill ever considered by the U.S. Congress – is at a critical crossroads and needs your help securing support with additional co-sponsors from your state. We are asking you to take action today to move the bill forward by asking your U.S. Senators and Representatives to co-sponsor the Childhood Cancer STAR Act.  Currently 164 Republican and 189 Democratic Representatives and Senators have signed on. Your assistance is greatly needed, especially in reaching out to your GOP Senators for co-sponsorship. Many Democratic Senators are waiting to sign on but we must have an equal number of Republican Senators ready to co-sponsor as well in order to maintain our commitment to demonstrating strong bipartisan support and momentum. Please click the following link to take action now –Childhood Cancer STAR Act 2017.

Last year the House of Representatives passed the Childhood Cancer STAR Act, but unfortunately the session ended before the bill could pass through the Senate and be signed into law. Now, a year later, our children and families affected by childhood cancer need help more than ever. It is a new Congress with a new agenda and a new set of priorities and we must fight to make sure progress towards passage of the Childhood Cancer STAR Act continues with even greater urgency. Our children no longer can wait.  Childhood cancer must be a national child health priority.

Why is the Childhood Cancer STAR Act Important?  
The STAR Act is designed to promote greater research efforts for childhood cancer by (a) expanding bio-specimen collections from childhood cancer patients enrolled in NCI-sponsored clinical trials capturing relevant clinical, biological and demographic data, (b) improving childhood cancer surveillance, (c) ensuring the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board, (d) requiring reporting on childhood cancer research projects conducted by the NIH, (e) enhancing research on the late effects of childhood cancers and creating models of care leading to improved quality of life for survivors.

Approximately 1 out of every 285 children will be diagnosed with childhood cancer prior to their 20th birthday. Two out of every 10 children diagnosed will not survive, making childhood cancer the number one disease killer of children in the United States. Despite these stark facts, there have been just 4 drugs approved by the FDA to specifically treat childhood cancer in the last 3 decades. This compares to more than 120 drugs approved to treat adult cancer. The majority of children today continue to be treated with chemotherapy drugs that were developed in the 1950s, ’60s and ’70s, leaving the majority of survivors with long-term chronic health conditions resulting from the toxic therapies. The STAR Act is an important first step towards enhanced research on behalf of children fighting cancer.

#PaintYourHairBlue portrays  a Celebration of Life with Hope for Tomorrow in the face of Pediatric Cancer.

This book is an inspiring memoir of Taylor- recounting her zest for life, her boundless energy and her fearless struggle with cancer.
Additionally, it will take you along Taylor and her family’s journey into the world of pediatric cancer treatments, pediatric oncologists, pediatric surgeons and hospital systems around the globe, providing invaluable insight into a world that is foreign to most. You will laugh, cry and in the end realize that love transcends all.

For more information visit our FB page at https://www.facebook.com/search/top/?q=paint%20your%20hair%20blue

Amazon is donating $1 million dollars to the American Childhood Cancer Organization

RACE for Children Act Is Law

On Friday, August 18, 2017, the RACE for Children Act became law, ensuring that novel and exciting new cancer drugs will now be developed not only for adults, but also for children with cancer.

One of the greatest challenges of pediatric cancer research has been a lack of access to novel and exciting drugs. Although cancer research has undergone quantum leaps in the past years, the new and exciting treatments for adults with cancer rarely translate into new treatments for children. As a result, kids with cancer get out-dated treatments that are often forty years old.

The RACE for Children Act will bring new drugs to kids with cancer by authorizing the FDA to require that novel drugs developed for adult cancers also be developed for children with cancer when the molecular targets of the drugs are relevant to childhood cancers.

In addition, the RACE for Children Act will result in tens of millions of new research dollars flowing into pediatric cancer clinical research each year, as drug companies undertake these new pediatric studies.

Thank you to #kidsvcancer for your heroic efforts

The Senate on Thursday overwhelmingly passed legislation requiring the pharmaceutical industry to expend more resources on treatment for childhood cancers. The bill, part of a larger measure reauthorizing user fees imposed by the Food and Drug Administration, heads to President Trump for his expected signature.
https://www.usatoday.com/…/senate-passes-bill-im…/537888001/

Samantha, Taylor’s cousin, who was by Taylor’s side throughout her treatment, then only 3 and 4 years old, has come full circle to making a difference in the world of pediatric cancer by interning @cumu …Columbia University Medical Center in the lab dedicated to Taylor and tay-bandz. Big shout out to thank Samantha for making a difference and continuing Taylor’s legacy.

We have an exciting update for you on where things currently stand with the STAR Act. With 212 co-sponsors in the House and 19 co-sponsors in the Senate, we are only 6 co-sponsors away from having a majority in the House!

Given that the House and Senate are not in session this week, now is a great time to reach out to your Members of Congress if they haven’t yet signed on. Staffers are still in the DC office working this week, and may have more time to catch up on outstanding emails that are awaiting their reply. Let’s keep the STAR Act fresh on their minds.

How you can help: Check here to see if your Members of Congress are co-sponsors of the Childhood Cancer STAR Act (H.R. 820/S. 292).  If you see that they are co-sponsors and haven’t yet thanked them for their support, make sure you send them a huge THANK YOU for supporting childhood cancer. Click on the following to access contact information for Senators  and contact information for Representatives.

The goal of the 2017 Childhood Cancer Action Day was to meet in person with Members of Congress and staff to share our stories and show our support for childhood cancer issues currently pending before Congress.
Advocates focused on three very specific requests:

(1) Co-sponsor the Childhood Cancer Survivorship, Treatment, Access and Research. This is the most comprehensive childhood cancer act ever taken up by Congress and has enjoyed broad bi-partisan support; it was passed unanimously by the House of Representatives in December 2016 and needs to pass in the House and the Senate during the current administration.

(2) RACE for Children Act-

There are almost 900 drugs in the adult pipeline, however only a handful are in development for children. The RACE for Children Act addresses the pediatric cancer innovation gap by dramatically increasing pediatric oncologists’ access to novel and promising new cancer therapies.

(3) Support a FY 2017 $2 billion increase for the National Institute of Health (NIH)). Approved by Congress in May 2017.

(4) Support an additional FY 2018 $2 billion increase for the NIH.

2017 Action Day is over, but the fight for the Childhood Cancer STAR Act and the critical provisions in the RACE for Children Act goes on and will not stop until we achieve our goal!

It has been a great week for pediatric cancer policy.  This week the STAR Act was passed by the House of Representatives and now proceeds to the Senate.

Help us by reaching out to your Senators. The directory is senate.gov

The STAR Act is the most comprehensive childhood cancer bill ever considered before this Congress. It would allow for a  better understanding of  the causes of pediatric cancer and the effects of treatment, provide doctors with resources necessary to help identify children who may be at risk, and improve collaboration among providers so doctors are better able to care for survivors.

“Battling cancer is one of the worst ordeals that any child and their parents can face,” said Speier. “And for many children and their families, that fight does not end with remission. With as many as two-thirds of childhood cancer survivors experiencing secondary cancers or follow-up complications to their treatment, it is imperative that we have a strategy to improve their care.

Children make up only 1% of US patients with cancer, children are a low priority for pharmaceutical companies that want to launch an effective drug quickly. The hassle of a pediatric clinical trial may not seem worth it until after the drug has proved to be safe and effective in adults. This process can take decades, leaving children with therapies that are sometimes almost obsolete.

To access therapies early, parents of these children can turn to compassionate-use programmes, in which companies give experimental drugs to people who are in desperate need. In the United States, firms that agree to provide medicines in this way will ask the Food and Drug Authority for emergency permission, which is almost always granted.

This system, although helpful for some, is rife with complications. Patients and their families report difficulties in applying for such programmes, and say that they rarely receive responses. Companies that withhold a drug – because it is in short supply or not right for a patient – can find themselves on the receiving end of critical social-media campaigns highlighting individual patients. And firms worry that if a person dies or is harmed while taking a drug, it could hurt the drug’s chances of being approved. No one knows how many requests parents make and how often companies approve them, but anecdotally, firms often deny drugs on the grounds that they have not been tested in children.

Proper clinical trials for childhood cancer drugs are scarce. Designing a clinical trial is never simple, but adding children to the picture complicates the process immensely. Children are not just ‘small adults’ – they metabolize drugs in very different ways. It is difficult to predict from adult or animal studies whether a chemotherapy drug will be more or less toxic in a child, and at what dose. The process of obtaining informed consent for children participating in a trial can also be more complicated. And companies fear that the death of a child – even if unrelated to the treatment – could bring bad publicity for a new drug.
“Legal loopholes often prevent children with cancer from accessing new drugs.”

Recent years have seen attempts to make more drugs available to treat children. In the United States, a 2003 law known as the Pediatric Research Equity Act (PREA) requires that companies develop a plan for how they will test experimental drugs in children, although many trials are exempted. A second law, called the Best Pharmaceuticals for Children Act, motivates companies to perform paediatric clinical trials by granting an extra six months of market exclusivity for the adult drug.
Overall, these laws have been successful, leading to hundreds of drug labels being updated with information for use in children. But legal loopholes often prevent children with cancer from accessing new drugs. For instance, therapies for conditions that do not affect children – such as Alzheimer’s disease – are exempt from the PREA. And exemptions intended for such diseases have been broadly applied to cancer. For example, therapies that are being trialled in adults with breast cancer are exempted because children do not get that cancer, even if the drug could treat a childhood cancer in a different organ.
Also exempted are drugs for ‘orphan’ diseases that affect fewer than 200,000 people in the United States. The number of orphan designations has skyrocketed in recent years – the improved ability to define the molecular basis of an individual’s cancer means that diagnoses have become increasingly subdivided, and the majority of approved cancer drugs now carry this orphan designation.

Legislation is now attempting to close those loopholes. The Research to Accelerate Cures and Equity (RACE) for Children Act, introduced to the US Congress on July 14th 2016, would require companies to apply the PREA to any therapy with a molecular target that is relevant to both an adult and a childhood disease. It would also end the exemption for orphan diseases. Last July, the European Medicines Agency passed similar rules to make it more difficult for companies to avoid testing drugs in children. This applies when the disease has a common mechanism in adults and children, unless the drug is likely to be unsafe in children.

With Congress now out of session and focused on the upcoming US election, the RACE for Children Act is unlikely to advance before next year. But when lawmakers pick it up, they should also address problems with compassionate-use programmes – and ensure a transparent and useful process for people to gain access to unapproved drugs. They should also encourage companies to make more drugs available through market incentives, and provide increased protection should something go wrong.

Message from Leah ( a dear friend of Taylor’s):
“For my 5th grade capstone project, I have chosen to make Taylor’s dream come true by fundraising for #taybandz  #ConqueringKidzcancer so that “some day no child will ever have to face cancer.”
So far, I have raised $2525. My goal is $5,000, and I am determined to reach it!”
Please consider a contribution to  #SaveaChildwithCancer and make Leah’s dream come true. EVERY dollar counts.

#childhoodcancer

This week is a critical time to raise childhood cancer awareness. Over 200 advocates will storm congress tomorrow to #stepup #staract and and #soundoff  to congress. Click here http://stepupforchildhoodcancer.com/sponsor-map/ for an updated map of STAR Act cosponsors and write on behalf of the kids

3RD Annual  A Cappella Invitational

SJC Sharps at St. Joseph’s College

May 7th……. 3:00- 5:00

Conquering Kidz Cancer is proud to carry on Taylor’s mission and fight as hard as she did in her honor. We ask for your help. No gift is too small and every dollar counts. Please consider a donation so that Taylor’s mission remains eternal at http://taybandz.mydagsite.com/pics_video
Taylor Matthews was 11 years old and newly diagnosed with cancer when she founded tay-bandz (later known as Conquering Kidz Cancer) to raise money for and awareness of pediatric cancer. This year, eight years after her death at age 16, she is honored on International Women’s Day for embodying everything the global celebration stands for. Taylor’s determination was limitless: to fight cancer, not be defined by it; to live meaningfully; and to make a difference.

Taylor’s singular focus on changing the pediatric cancer world while fighting a battle for her own life raised $1 million in under five years. After her diagnosis and the beginning of what would be years of treatments, Taylor began designing fashion accessories to be sold at neighborhood and school events. Her idea took off as she and legions of friends got to work assembling, bagging, and selling the items.

In a profile written two years into Taylor’s battle, the Scarsdale Inquirer said, “In the past 18 months, Taylor has declared war against a diagnosis of bone cancer and taken to task a country that vastly under funds research for childhood cancers. Taylor’s fundraising crusade, waged while undergoing multiple surgeries, high-dose chemotherapy and countless hospitalizations, has changed the face of pediatric cancer research, already raising roughly $300,000.”

The Inquirer cited Taylor’s involvement in every medical decision she faced, determination to spend as little time in the hospital and as much time at school as possible, and her refusal to play by the rules. When a nurse urged her to walk more following a surgical procedure, she grabbed her IV pole and her father and left the hospital for ice cream. Taylor served as president of the foundation until her death in 2008.

In a piece about Taylor’s memorial service, the Scarsdale Inquirer wrote that countless friends, teachers, and school administrators had gathered to mourn and to celebrate the courageous, endearing, and unstoppable teenager. “Friends and family members who spoke addressed the many sides of Taylor’s unique personality: her determination, humor, intelligence, mischievousness and, above all, enormous capacity for love. They all spoke of how Taylor’s strength had made them stronger and how her love would always be in their hearts,” said the Inquirer.

Taylor’s mission has continued in her memory. “Taylor always said, ‘if one child could be saved, the fight would be worth it,’” said her mother Susan Matthews. The foundation has donated funds to enable cutting-edge research at institutions around the country including MD Anderson, Memorial Sloan Kettering, Columbia Medical University, and the National Institutes of Health.

Conquering Kidz Cancer is focused on research that will reach sick kids today. The foundation funds precision medicine initiatives that harness the power of gene sequencing to customize treatments. “When kids get sick, they get sick hard and fast. They need treatment immediately,” said Matthews. Clinical trials, commonplace for adult medicines, are rare for children’s drugs. And, Matthews noted, parents fear if they enroll their child in a study, their child might receive the placebo and have no chance at survival.

According to its website, International Women’s Day, a tradition since 1975, celebrates “the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity.” While Taylor would not live to adulthood, her achievements will give that gift to countless other children in battle against cancer. She truly embodies the word achievement. Taylor faced adversity head-on, offered a lifetime of love to the people lucky enough to be a part of her world, and continues to give hope for a meaningful and productive life to children who had no hope just a short time ago.

The National Cancer Moonshot is generating a great deal of excitement in the childhood cancer community. The initiative, to be headed by Vice President Joseph Biden, calls for increased funding from both the public and private sectors, increased sharing of data among research institutions, and the development of new drugs and treatments for even the rarest childhood cancers. Biden said his goal is to make 10 years’ worth of advances in the next five years and to put an end to cancer.

A press release from the White House noted that much progress has been made in developing new techniques to diagnose and treat cancer, but there is still much work ahead. The National Cancer Moonshot will begin its work with a $1 billion investment authorized by the Obama Administration. Efforts will focus on prevention, vaccine development, early detection, immunotherapy, combination therapy, genomic analysis, and data sharing.

A child who dies of cancer loses 71 years of life.

The average age for a child who dies of cancer is 8.

SoundOff by sending a letter to Congress!
http://www.soundoffatcongress.org/direct/nY2f

#SoundOff @ Congress
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Tweet directly at Congress, or start your own campaign. SoundOff sends the message to your House Rep or Senators on the issues that matter to you.
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In person, the doctors at Columbia Medical University explained the future of pediatric oncology as it pertains to Precision Medicine. We are currently funding Precision Medicine at Columbia. See our research tab for further information.

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Support Charity While Holiday Shopping

Today is #Giving Tuesday, a day dedicated to supporting things  most dear to our hearts. Every day 36 children are diagnosed with cancer. Please help to save the lives of these  children from  this deadly disease. GIVE HOPE  while shopping at amazon smiles and choosing tay-bandz as your charity. http://smile.amazon.com/ch/20-0394954

New York City, September 26, 2015.

tay-bandz was founded in 2003 by Taylor “Tay” Matthews, who, at age 11, was diagnosed with bone cancer. Taylor learned that pediatric cancer research was devastatingly underfunded, and took it upon herself to create and sell within the local community a variety of head-“bandz,” the money for which went directly to her cause. tay-bandz quickly became a 501 (C) 3 non-profit organization dedicated to raising awareness, and funding research for pediatric cancer. Taylor’s hope was that, someday, children diagnosed with cancer would be able to have normal life spans, living healthfully long after their treatments were completed. Today, these children are often stricken by secondary cancers resulting from their chemotherapies and radiotherapies, or they are hampered by chronic health conditions that can be severe and life threatening. We are committed to funding “precision medicine” at Columbia Medical University for the next 5 years. Precision medicine is tailor-made for the individual based upon his or her particular genetics and is far less toxic than traditional cancer therapies. See more information about precision medicine below.

With our expanded focus, tay-bandz has changed its name to Conquering Kidz Cancer. With our new name and branding we’ve kept, but updated, Taylor’s signature “good luck” ladybug in our logo. To celebrate this new branding, an event was held at a private residence overlooking Central Park on September 26th. Over 50 of our supporters joined us as we toasted the research we’re helping to fund. Many experts in pediatric cancer treatment, including many of the doctors working on precision medicine attended the event. Amongst them were lead researcher Dr. Andrew Kung, as well as Dr. Darell Yamashiro, Dr. Julia Glade Bender and Dr. Michael Weiner. Internationally acclaimed opera singer James Valenti also attended and even performed. See photos from this event at https://www.facebook.com/media/set/?set=a.1005472022817453.1073741838.274641529233843.

Taylor always believed that change started with her, one person, one charity and lots of volunteers. We ask that you share our website www.conqueringkidzcancer.org with your friends, and consider donating to our cause. You have the power to enable Taylor’s vision to come to fruition. Please consider getting involved and spreading the word. Stay tuned for more news about our “Breakfast with Champions,” an event that we will be hosting in September 2016 to help in the battle against pediatric cancer.

About Conquering Kidz Cancer:

Conquering Kidz Cancer is an organization dedicated to raising awareness and funding research for pediatric cancer. Taylor always believed that individuals could make a difference through private efforts. Her dearest hope was that “someday no child would ever have to face cancer.” Conquering Kidz Cancer is a “kids helping kids” organization driven by community based efforts. The Federal government provides minimal funding for children’s cancer. Children are not politically powerful, don’t pay taxes and don’t march on the lawn of the White House. If a difference is to be made in the lives of these children, it will be made by those who dedicate themselves to speaking for them. Without public outcry, these children don’t stand a chance. Taylor knew this first hand and was determined to change it. You can view a brand new documentary about Conquering Kidz Cancer at https://www.youtube.com/watch?v=-eOin5qo7yw

About Precision Medicine:

Precision medicine, a topic often discussed by experts and, more recently, the public—thanks to President Obama’s Precision Medicine Initiative—is an approach to tailor treatments for human diseases based on the characteristics of each individual, as opposed to a one-size-fits-all approach. An important aspect of tailoring treatment for an individual’s disease lies in our ability to precisely identify molecular abnormalities that drive that person’s disease. Recent advancements in human genome sequencing technology are making that a reality, and therefore, precision medicine is being more widely applied to treat cancers in the recent years. Major tools for precision medicine are therapeutics developed to target a specific molecular abnormality, known as targeted therapy, which are more precise and less toxic than traditional treatments such as chemotherapy and radiotherapy. Targeted therapies are proving to be a major leap in the cancer treatment arena, which had not witnessed substantial progress for decades.

We are very proud of Congressmen McCaul, Van Hollen, Speier, Senators Reed, and Capito for introducing the Bipartisan Childhood Cancer STAR Act! The Childhood Cancer STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year.

McCaul, Van Hollen, Speier, Reed, and Capito Introduce Bipartisan Childhood Cancer STAR Act
WASHINGTON, DC – Today Congressman Michael McCaul introduced the bipartisan, bicameral Childhood Cancer Survivorship, Treatment, Access, and…
MCCAUL.HOUSE.GOV

The NCI’s budget has decreased more than $1.1 billion (24.7%) since fiscal year 2003.

Dear Friends,

As we look back on 2014, we are excited to share with you what is happening at tay-bandz.

Our goal has been and always will be to help children with cancer by funding cutting edge research that can impact their lives now, not years and miles of bureaucratic red tape from now. Our website continues to be a source of support and information to families in battle and our all-volunteer board ensures minimal foundation overhead.

Over the past year, we have witnessed tremendous clinical progress at Memorial Sloan-Kettering Cancer Center, the Children’s Hospital at Columbia University and the National Institutes of Health. Research funded by tay-bandz at these institutions includes genetic sequencing; cell bank development; customizing treatment to a child’s individual tumor; and antibody development. Genetic mutations and medications to block them have been identified resulting in customized treatments that target the precise characteristics of a child’s tumor. Children who have benefited from tay-bandz funded research are living longer, healthier lives.

Also this year, tay-bandz joined the National Coalition Against Cancer, an umbrella organization of pediatric cancer foundations that seeks legislative change in cancer public policy. We are striving to streamline research and development at the pharmaceutical companies; to streamline approval processes at the FDA; and to increase government funding to pediatric cancer research.

We will never stop pushing the boundaries of conventional therapies, dated public policy, and the logjams that keep good drugs in the lab and out of the clinic. All our children deserve a bright and healthy future.

With deepest thanks for your support in the past, we ask you to renew your commitment to tay-bandz with a tax-deductible gift of any size.  With your continued support, we can fund research that will change the lives of sick children and their families when they need it. Now.

With warmest wishes for a happy and healthy 2015,

All those at tay-bandz

For each pair of PYSIS sold by December 31, $20 will go to tay-bandz, in support of its funding of life-saving research and raising awareness for pediatric cancer. So, this holiday season, HOPE for your SHOES can also bring HOPE for a CURE!

Kappa Delta at Susquehanna University went GOLD in honor of children with cancer. By wearing gold shoe laces they came together to raise awareness that September is childhood cancer month and  that the color is gold. Thank you for giving children with cancer, who cant fight alone, a VOICE!!

Funding for all cancers is not the same, and funding for childhood cancer research is severely lacking. Kids need their own specialized research because they are not just little adults. Awareness can lead to funding which leads to research which leads to better treatments. Federal funding makes up the majority of funding for childhood cancer research, yet it barely cracks the $200 million level from a government with a total budget of $3.6 trillion and makes up less than 4% of NCI’s budget (adults get 96%).
Incredibly, seemingly without notice or concern from media or the NCI, this past April we learned that the incidence of childhood cancer has increased over the last seven years, increasing from 1 in 330 to 1 in 285 for children under 20 years old. While 80% of kids live five-years after diagnosis, the long-term survival rate is less than 80%, maybe as low as 66% on average, and of course for some kid’s cancers it’s virtually 0%. 20% of the five-year survivors subsequently die from their cancer, a secondary cancer, or long-term effects of the “cure” or the treatment over the next 25 years, the gross term excess mortality. 98% of the five-year survivors face long-term health effects from the treatment, with about half suffering severe or moderate life-long effects.
So much more needs to be done.
The childhood cancer community is made up of incredible people who bring diverse backgrounds and talents to the fight. People want to collaborate to cure childhood cancer faster; and together we could change the world.
These numbers and facts are some much less complex when your child has cancer or if you’ve lost a child. It’s really very simple: We as a country, as adults, are still not doing the best we can to save our own sons and daughters from the disease that kills more kids than all others combined. We need to challenge our leaders to do better, we are way past the awareness stage…..

Participate in the SoundOff at Congress: http://www.soundoffatcongress.org/nY2f
Take a #StepUpSelfie showing their advocacy in action. Example: walking up landmark steps like the Capitol or a state house.

Kids are not just little adults – they need targeted research for targeted cures. Be inspirational and motivational today as we envision, together, a future where every child with cancer can look forward to a long and healthy life.
Promote the SoundOff campaign http://www.soundoffatcongress.org/direct/nY2f

It’s day 4 in this phase of the #StepUp campaign! As advocates from across the country are arriving in Washington today in preparation for tomorrow’s Action Day training, we are hoping to keep up the flurry of virtual activity. This is your daily reminder with the message-of-the-day and helpful tips.e-of-the-day and helpful tips.

Today is Day 1 of The Childhood cancer community’s address to Congress, “Step Up: More Funding for Childhood Cancer Research”. It is a 7 day campaign that will end in “Childhood Cancer Action Day” where childhhood cancer advocates will discuss the impotant issues with their congressional district. Help us to increase the NCI appropriations and reauthorize “The Caroline Pryce Walker Act” by joining th SoundOff campaign at http://www.soundoffatcongress.org/nY2f

The Caroline Pryce Walker Childhood Cancer Reauthorization Act will help kids with cancer by expanding research, improving the tracking of childhood cancer cases by state registries, and funding a federal study to examine barriers to developing new pediatric oncology drugs. The bipartisan Act is sponsored by Senators Jack Reed (D-RI) and Deb Fischer (R-NE) and Representatives Chris Van Hollen (D-MD) and Michael McCaul (R-TX), co-chairs of the Congressional Childhood Cancer Caucus.

A natural fragmentation arises from having a diverse community of passionate advocates. Much of the strength of the community comes from the many different groups and individuals who have joined the fight. However, with greater cooperation among participants, more coordinated action, and higher levels of collaboration, we can make more progress, faster. CAC2 hopes the childhood cancer community will benefit from greater levels of coordinated action that: (1) leverage the unique strengths of the members, (2) minimize waste of precious resources and expertise, and (3) drive better outcomes for patients and their families. The primary values underlying CAC2 are to put the children and their families first in everything we do and to support organizations active in the fight against childhood cancer. We will support, not compete with, our member organizations and the childhood cancer community through action-oriented, member-directed projects.

In case you missed it, childhood cancer is getting less and less rare. The American Cancer Society now estimates that nearly 16,000 kids under the age 20 will be diagnosed with cancer in 2014, and that the risk of being diagnosed with cancer before age 20 has increased to 1 in 285.

tay-bandz and our event “Celebration of Life” sponsored by Toshiba is included in the spring issue of Glow Magazine. See below./Users/susanmatthews/Desktop/Glow_Spring14_EventsSection_partial_r3.pdf

Last night U Penn Dischord and Drexel Clefomanics held a great Tunes4Tay to benefit tay-bandz. Congratulations!!!

TAY-BANDZ AND THE SUPER BOWL
tay-bandz has been named, along with The NFL’s Players Association as the charity of choice for what’s fast becoming one of the most exciting events surrounding the SuperBowl and certainly one of the most exclusive, the official NFL GIFTING SUITE! Supported directly by the NFL Players Association, this event brings together the most concentrated mix of players (current stars, players and legends), professional athletes from other leagues, A-List celebrities from the worlds of film, television, fashion and music as well as socialites, influencers trendsetters and media.

Thank you to Jan Mercer Dahms from 6 Figures and our supporters:

-Alyssa Peek | Portrait & Fine Art Photographer | Abstract Nature Series
-Christi Scofield | Contemporary Fine Art | Pop Up Theology Series
-Oscar Rivera | The New York Photographer | Quiet Storm Serie
-Janet Krupin Broadway Singer

For an amazing night of Celebrating Life held high up in Times Square at the Toshiba headqaurters, The lights were off, the candles were glowing and the views from Times Square were ablaze as we all joined in a wonderful evening celebrating Life with tay-bandz as 6 Figures philanthropic charity of choice.

Thank you to Toshiba for hosting the event!

tay-bandz collobrated with Virgina’s House of Hope at Carneige Hall inspiring all of us with HOPE for children in need and hope for children to have a future.

“I want to offer the world a little prayer…” a prayer 4 Tay
…a prayer to save a child’s life… Tune in to Jarson Davis’s new release tomorrow on u tube
contribute to his performance at http://wedid.it/campaigns/768

NCSU Ladies in Red Sing for tay-bandz
FIRST RALEIGH A CAPELLA EVENT
TUNES 4 TAY Rocks RALEIGH FOR RESEARCH

LADIES in RED and 5 Local College Partners JOIN
A CAPPELLA GROUPS ACROSS THE COUNTRY
SINGING TO END PEDIATRIC CANCER. Thank you NC Stategrains, Wolfgang A Cappella, The Sapphires, Accappology and Rip Chord for joining the Ladies to sing your heart out to wipe out pediatric cancer.

Thank you to our generous sponsors for their donations throughout Pedaitric Cancer Awareness Month.
-THANK YOU HELEN FICALORA for your donation of beautiful and meaningful butterfly charms.
-THANK YOU LIZ HILLARD for your donation of “Be powerful” dog tags.
-THANK YOU Anne Akers for your donation of Glow Magazine.
-THANK YOU Pip’s gluten free bakery for your donation of scrumptious cookies.
-THANK YOU Bloomingdales, NYC for your donation of cosmetics.

Samantha honors her cousin, Taylor, during the friday forecast on WPIX channel! See what Samantha and her sister Sofia are doing to join the fight against pediatric cancer. Rainbow looms bracelets made by Samantha and Sofia are selling like hot cakes. Go to “shop for a cause” http://video.pix11.com/Friday-Forecaster-Samantha-Cohane-25205724

This September, tay-bandz is making strides to end pediatric cancer in more ways than ever! Thirty days packed with fundraisers, events, and television appearances. You have to be there!

-Friday Forecast (September 27th): Samantha Cohane, will appear on WPIX News to give the weather forecast, representing tay-bandz in honor of her cousin,Taylor Matthews. Tune in!

-Edgemont Relay (September 21): Edgemont High School with hold a Relay for Tay to raise funds and awareness for pediatric cancer.

-SPARKS (September 24): The SPARKS Network will hold an event featuring tay-bandz at Toshiba in Times Square. To RSVP email aimeebdavis@gmail.com

-Tunes 4 Tay launch: September is the official launch of Tunes for Tay, the new accappella fundraiser dedicated to raising funds and awareness for pediatric cancer. For information on the acappella groups already participating or to find out how you can be involved visit “get involved”

Use your voice and your passion to help us wipe out pediatric cancer this September!

September is PEDIATRIC CANCER AWARENESS MONTH:
Use your voice and your passion to help us wipe out pediatric cancer this September!

-Don’t forget to wear your gold to show our support during Pediatric Cancer month! For gold shoe laces as well as tay-bandz apparel and accessories, visit “shop for a cause”.
-On September 27th Samantha Cohane, will appear on WPIX News to give the weather forecast representing tay-bandz in honor of her cousin,Taylor Matthews. Tune in!

On September 21st Edgemont High School with hold a Relay for Tay to raise funds and awareness for pediatric cancer.
On september 24th The SPARKS Network will hold an event featuring tay-bandz at Toshiba in Times Square.

Tunes 4 Tay launch: September is the official launch of Tunes for Tay, the new accappella fundraiser dedicated to raising funds and awareness for pediatric cancer. For information on the acappella groups already participating or to find out how you can be involved visit out Tunes 4 Tay page.

September is a time to raise awareness, show children with cancer that we care and celebrate their lives.

September 13, is now recognized as “National Childhood Cancer Awareness Day” as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

“Never before in history has the dream of eliminating childhood cancer been so attainable, yet seemed so elusive,” said Senator Allard. “We live in a nation where the effectiveness of treatments and technology offer hope to children who dream of a bright future. Each case of childhood cancer is a very personal tragedy that can strike any family with children, at anytime, anywhere. In setting aside September 13th to recognize this battle on cancer, we continue of our efforts to draw attention to the victims of childhood cancer and the great work of the families and organizations who continue the fight.”

“We have made tremendous strides in the fight against childhood cancer, but far too many children still suffer and lose their lives to this illness. The more we know as a nation the better able we will be to prevent and treat the disease and help those who are battling and surviving pediatric cancers. National Childhood Cancer Awareness Day is an opportunity to reach out to all Americans with the facts about childhood cancer, and this day will be an important symbol of our commitment on all days to find a cure,” said Senator Clinton.