Making Headway Foundation and St. Baldrick’s Foundation Partner to Fund Childhood Cancer Research

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The Making Headway Foundation is proud to announce that it has partnered with the the St. Baldrick’s Foundation, to support the best research to find cures and better treatments for kids with cancer.

This year, the funds raised by the Making Headway Foundation is providing $50,000 to support a $100,000 St. Baldrick’s Research Grant awarded to Kristopher Sarosiek, Ph.D., at Harvard T.H. Chan School of Public Health at Harvard University. Dr. Sarosiek will directly test a novel strategy for improving treatment outcomes for children with medulloblastomas: targeting c-Myc genes to simultaneously protect healthy neurons from radiation-induced toxicity while making tumor cells more sensitive to therapy.

Although patients with certain types of brain tumors are frequently cured by well-established treatments, patients that experience tumor relapse have limited treatment options and frequently succumb to their disease. In addition, the side effects resulting from radiation therapy can result in lifelong cognitive impairment.

Dr. Sarosiek recently found that decreasing the expression of c-Myc genes and its downstream genes with a targeted drug can enhance the radiation sensitivity of brain tumors while reducing radiation sensitivity of healthy brain cells. This would suggest that there is a potential to increase cure rates and decrease treatment-associated toxicities. By testing the sensitivity of medulloblastomas to c-Myc inhibitors, it can help determine the extent to which these inhibitors can protect critical brain cells from radiation treatment.

Edward and Maya Manley and Clint Greenbaum founded the Making Headway Foundation to provide care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure. Both families have each had a child who survived a pediatric brain tumor and found that traditional hospital-based medical programs failed to provide essential humanistic services that enabled a child to reintegrate physically and emotionally with his or her family, school and peer groups.

For the past 23 years, the Making Headway Foundation has been supporting families of children diagnosed with a brain or spinal cord tumor. During this time, it has helped thousands of families through an unimaginably difficult time, providing a wide range of holistic programs and services. Making Headway carries on with its unique work, providing a continuum of services that focus on both research and quality of life for children and their families. In 2018, Making Headway has partnered with the St. Baldrick’s Foundation to fund the best childhood cancer research.


About Making Headway Foundation

Making Headway Foundation was founded with a unique mission that emphasizes the importance of helping children through holistic, wide-ranging services. We provide a true continuum of care, in which our programs are able to effectively assist patients, families, and doctors. The needs of a child with a brain or spinal cord tumor are complex and diverse. Making Headway meets these needs through a variety of individual care, family care, and medical care. We invest in both long-term and short-term solutions to the medical and emotional needs of the families we serve. Our flexibility and pro-active philosophy has led to a growth in services, allowing Making Headway to provide Care, Comfort, and a Cure to more families than ever before. To learn more about the Making Headway Foundation, visit us at MakingHeadway.org.

About St. Baldrick’s Foundation

As the largest private funder of childhood cancer research grants, the St. Baldrick’s Foundation believes that kids are special and deserve to be treated that way. St. Baldrick’s is leading the charge to take childhood back from cancer by funding the most brilliant childhood cancer research experts who are working to find cures and better treatments for all childhood cancers. Kids need treatments as unique as they are – and that starts with funding research just for them. Join us at StBaldricks.org to help support the best cancer treatments for kids.

Making Headway – Patient Story (Molly)

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Molly was a bright young elementary school student who excelled academically and was well-liked by her teachers and other students. One day she began feeling very sick and her family rushed her to the doctor. Molly had a brain tumor and required complex neurosurgery. She survived and recovered after several rounds of chemotherapy and radiation.  Unfortunately, the tumor and the radiation had permanent side-effects that impacted her speech, hearing and cognitive abilities. Molly’s school was not equipped with the programs and services for children with these types of special health care needs. The family was referred to one of Making Headway’s expert Educational Specialist.

Over the next decade, Making Headway worked with the family, teachers, and school administration to ensure that Molly received all the complex services, accommodations and equipment she needed. In Molly’s case, this included a 1-on-1 health paraprofessional; hearing and vision education services; physical, occupational, and language therapies; and transportation. Molly recently earned her high school Regents diploma and is now looking forward to college.  With help from Making Headway, Molly was placed in the right environment and given the tools she needed to succeed.  For more stories visit, https://makingheadway.org/children/.

Note: For confidentiality reasons, the name of the patient has been changed.

5th Annual Brian McCabe Drive for a Cure Golf Outing

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There is the rare day that you can enjoy a guilt-free day off from work to go golfing. That’s because you could be part of the 5th Annual Brian McCabe Drive for a Cure Golf Outing, which raises money to support children with brain cancer. Enjoy a beautiful afternoon out on the links for a great cause. September 25th, 2017, Split Rock and Pelham Bay Gold Courses. It’s not too late to sign up, just visit https://makingheadway.org/mccabe/.

Making Headway Summer Newsletter

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The Making Headway Summer 2017 Newsletter is Here.

Featured articles include new research grants, the new MakingHeadway.org website, “Something Magic”, Head to the Hill, “Why I’m Doing My Part”, new partnerships, and so much more.

Do view the newsletter, visit https://goo.gl/1fV8ei or click here.

Making Headway Awards Grants to Children with Brain Tumors

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Press Release: The Making Headway Foundation approves over $350,000 in new grants to help children with brain tumors

Over the past 20 years, Making Headway has invested over $20 million in research and services to these children and their families. In January 2017, Making Headway continued this incredibly valuable work by approving over $350,000 in new grants to The Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at the NYU Langone Medical Center. These grants will fund a variety of programs that address both the short-term and long-term needs of children with brain or spinal cord tumors.

Today, there are more than 28,000 children living with a brain or spinal cord tumor, commonly referred to as a Central Nervous System (CNS) tumor. Over 2,500 children (seven every day) are diagnosed every year. In 2016, pediatric CNS tumors caused more deaths than any other type of pediatric cancer. Making Headway is committed to helping these children by providing Care, Comfort, and a Cure.

In order to have the most significant impact Making Headway focuses on holistic approaches to research and services. With this in mind, it approved funding for four significant, but very different research grants. For example, one grant will fund the NYU Center for Biospecimen Research & Development, which catalogs and stores thousands of invaluable medical samples from children with brain or spinal cord tumors. Doctors from around the world can request and receive samples for their research, at no cost. Making Headway is trying to encourage more research and collaboration, with an expectation of practical improvements related to the treatment and prevention of pediatric brain and spinal cord tumors. This grant is complimented by another that supports a Clinical Trials Manager. Clinical trials are important research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. The Clinical Trials Manager will oversee 35 active research projects that are devoted to pediatric brain or spinal cord tumors. Each trial has the potential to discover a new treatment or possibly a cure for these pediatric tumors.

Making Headway is also investing in research to help children from a psychological perspective. It is well-established that children with brain or spinal cord tumors present with a host of cognitive, academic, and socio-emotional challenges both during and after treatments are completed. Funded by Making Headway, the Hassenfeld Neuropsychology Testing Program evaluates and monitors newly diagnosed children. This is part of unique, formal protocol created at Hassenfeld (through another Making Headway grant), in which all newly diagnosed patients receive pro-active interventions, such as educational support and related services as needed.

Making Headway understands that in order for children to receive the highest quality medical services, there must be specifically trained doctors who understand the unique technical needs of pediatric brain and spinal cord tumor patients. Making Headway has been helping to meet this need through an annual grant to support a pediatric neuro-oncology fellowship at NYU Langone Medical Center. Chosen from among the best candidates in the country, these fellows evaluate and treat a broad range of brain or spinal cord tumors in children, manage neurological complications of systemic cancer in children, participate in the conduct of clinical trials and prepare for an academic leadership career in pediatric neuro-oncology. Now in its 6th year, this program has been very successful, as each fellow has moved forward with a robust career in pediatric neuro-oncology.

Making Headway was created 20 years ago by a few families who had a child diagnosed with a brain or spinal cord tumor. Since that time, this Westchester-based non-profit organization has been dedicated to helping other children and their families. Its investments in medical research and training have been critically important, leading to new breakthroughs and training the next generation of pediatric neuro-oncologists. Beyond research, it provides a true continuum of services in order to help families impacted by pediatric brain or spinal cord tumors. Its ongoing programs include educational and psychological counseling, fun family events, a scholarship fund, and a variety of in-hospital care services.

The mission of the Making Headway Foundation is provide care and comfort for children with brain and spinal cord tumors while funding medical research geared to better treatments and a cure. To learn more, or to donate to Making Headway, visit www.MakingHeadway.org or call 914-238-8384.

“One Team – One Dream”. Greeley Walkathon to Raise Funds for Pediatric Cancer

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“One Team – One Dream”, The 3rd Annual Athlete Walkathon
Location: Horace Greeley High School Competition Fie, 70 Roaring Brook Rd, Chappaqua, NY 10514
Time: 11am-1pm
Link to Press Release

High School students from Horace Greeley have partnered with The Gardner Marks Foundation and The Making Headway Foundation to host “One Team – One Dream”, the 3rd Annual Athlete Walkathon, to support Pediatric/Adolescent cancer research and programs that assist these children and their families. The event, scheduled for November 6th, will raise awareness and funds for Leukemia, Lymphoma, and Brain and Spinal Cord Tumors affecting kids and young adults.  Currently, local students, athletes, and families are helping to make this event a success are working on getting representatives from every sports team in the High School as well as many other local sports groups and organizations to participate.  This grassroots event was created in memory of Gardner Marks (Greeley Class of ’08) who was an athlete at Greeley. Gardner lost his life due to complications from cancer.  The Greeley Sports Boosters is sponsoring the Walkathon and are helping to promote the cause.

Anyone who wants to help fight against Pediatric/Adolescent cancer is welcome to participate in the Walkathon.  The event is scheduled on November 6th, from 11am-1pm, at the Horace Greeley High School Competition Field. This year’s slogan, “One Team – One Dream” focuses on the power that individuals can have by working together as part of a universal team.  We would love to have you walk with us on the day of the event!

Pediatric/Adolescent cancer is the leading cause of death by disease among all kids in the United States.  Currently, there are almost 400,000 kids fighting cancer, with an estimated 16,000 new cases of cancer diagnosed each year.  Many years ago, the 5-year life expectancy after diagnosis was only 50% for kids with cancer.  However, thanks to large investments in cutting edge research and treatments, the rate of children who pass away due to a cancer diagnosis has been cut in half.  Many of these medical breakthroughs have come as a result of the direct investments by individuals and local charities.  Additionally, organizations like The Making Headway Foundation and The Gardner Marks Foundation are investing in quality-of-life programs that directly provide a holistic set of services to pediatric/adolescent cancer patients and their families.  The 3rd Annual “One Team, -One Dream” Horace Greeley Athlete Walkathon is a wonderful way that local families can participate in the fight against pediatric/adolescent cancer.

Proceeds from this event will be split evenly to support two local non-profit organizations. The Gardner Marks Foundation is devoted to raising money toward helping families in need of financial support, logistics, and mental health. Now in its 20th year of operation, The Making Headway Foundation provides care and comfort for kids with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure. 100% of donations will go directly to pediatric cancer research or services.  For more information or to donate visit www.greeleysportsboosters.org or https://mkghdwyf.ejoinme.org/Greeley2016.

Volunteerism and the National Day of Service

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GreenbaumsWith Martin Luther King, Jr. Day occurring on January 18, there is much talk about volunteerism and the National Day of Service. At Making Headway Foundation, we are lucky to have the best volunteers around. We are most grateful for those who tirelessly fundraise for us by helping with our annual Winter Show. Proceeds from this special event funds 40% of our annual budget and we could not be successful without the help of our patient families and friends.

This year, our show will once again be held at the New Victory Theater and it is called Untapped! It is an afternoon performance with an audacious Aussie dance troupe that combines funk, hip-hop, jazz and rock for a high-octane afternoon of tap.

Sunday, February 21, 2016 at 12:00 pm

The New Victory Theater
209 West 42nd Street
Between 7th and 8th Avenues
New York City
CLICK HERE TO ORDER TICKETS

Contributions
Anyone who cannot attend the performance can still bring joy to those who need it most. Contributions will enable Making Headway to invite seriously ill children and their families to attend the performance free-of-charge.

Making Headway will use the proceeds from this event to fund diverse support services, projects and research.
CLICK HERE FOR CONTRIBUTIONS

Thank you to all of our volunteers who serve Making Headway Foundation year round!

MAKING HEADWAY FOUNDATION AWARDS RESEARCH GRANTS

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Photo by Catherine LeponePress Release
Making Headway Foundation Awards Research Grants
Chappaqua, NY based foundation funds more than $300,000 in grants for pediatric brain and spinal cord tumor research.

Chappaqua, NY – December 1, 2015:  The Board of Directors of Making Headway Foundation recently voted to award more than $300,000 in grants to researchers studying pediatric neuro-oncology.

NYU Langone Medical Center received four grants.  The total amount awarded was $251,242.  These grants cover neuro psychology screening and assessment for patients; a clinical trials manager; a pediatric neuro-oncology fellowship for Dr. Devorah Segal; and a human brain tissue bio repository for the purpose of obtaining and archiving tissue samples from pediatric brain tumor patients.  These samples will be made available to researchers within NYU and to other institutions at no or nominal cost.

Additional grants were made to Columbia University of New York City and The Hospital for Sick Children in Toronto Canada for $30,000 and $25,000, respectively.  The Columbia University grant will be to study the long term cognitive & family aspects of recovery from a pediatric brain tumor and will be conducted by Dr. Stephen Sands, Associate Professor of Clinical Psychology.

The Hospital for Sick Children in Toronto, Canada will study the molecular make up of low grade gliomas in children in order to improve clinical decision making.  The goal is to enable less toxic therapies for good prognosis patients and improved targeted therapies for children with poor expected outcomes.  Drs. Uri Tabori and Cynthia Hawkins will spearhead this project.  Making Headway Foundation is partnering with A Kids’ Brain Tumor Cure (PLGA Foundation) on the funding for this study.

“For many years Making Headway has been dedicated to the care of children with brain or spinal cord tumors and their families.  Finding better treatments and a cure has always been part of our mission and, with these grants, we take another step forward in that most important aspect of our work,” said Edward Manley, Founder and Board Chair.    The Board’s Vice President of Research Sam Schwartz added, “The Board and its Medical Advisors are proud to announce the award of these grants to deserving programs in pediatric neuro-oncology.”

Making Headway Foundation is now in its 20th year.  Founded by Edward and Maya Manley of Chappaqua, NY and Clint Greenbaum of Westhampton Beach, NY, its mission is to provide care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure.  The Founders each had a child who survived a pediatric brain tumor.

The Story of Jack

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This story was submitted by one of our patient families. We think you will find it moving and inspiring.
—Making Headway Foundation.

Jack was born with a ticking time bomb in his brain. Some might focus on the negative, the hurt, the pain; but I survive by seeing the small miracles that have kept my son in the fight.

Jack at the age of two was quietly dying. Unable to communicate what was happening to him, and no visible major symptoms we had no idea how sick he really was. Instead of asking WHY my little boy had Cancer and worry about how I almost lost him; I thought about the string of small miracles that led to Doctors diagnosing this seemingly normal healthy little boy with a deadly disease two weeks before it was scheduled to take his life.

On September 17th, Jack was placed in an experimental MRI-Operating Suite. A feature so new at Children’s Hospital Boston that there was only one Neurosurgical team trained to operate in it and they were the team on call that day. I tried to process the words of the lead Neurosurgery as he said, “Jack is a very sick little boy” which I interpreted to mean, please don’t get your hopes up during the 14 hour brain surgery I did not focus on the negative images or morbid scenarios that pounded my sleep deprived brain. I reminded myself that cancer treatment in kids is a marathon, not a sprint. I fought to put hope at the forefront as I waited for the nurse to approach us every thirty minutes during his surgery. Twenty eight “routine” status updates. Like anything about a fourteen hour surgery on your child could possibly be routine! I think they decided on thirty minute status updates because that was the maximum amount of time a parent could be left alone without reassurances.

I did not let fears consume me. Instead of being paralyzed by the situation, I was in awe that Jack was inverted, feet in the air while Harvard’s Chief of Pediatric Neurosurgery led a team operating in my son’s brain with specially developed techniques and equipment. Procedure learned through research and families that had gone before me. I summoned confidence that we were at the right hospital with the right medical professionals who were racing to cut in to the most expensive real estate in the brain before it killed my son.
I do not let myself get angry about what life my son should have had. I am thankful for the life he has. I gather strength from medical staffs that put a reassuring smile on their face and work long days to take care of these kids and their families. I celebrate each birthday as a milestone checked off as one closer to a cure and wish I could share my appreciation with the researchers that dedicate themselves repeatedly for long hours away from their families trying to save mine.

I am brought to my knees in gratitude for the thousands of people who work to raise money and awareness every day to keep funding that research and the people that take care of Jack. I am truly blessed that specific people and organizations have come into our lives right at the time when we needed them most. Organizations like Making Headway Foundation, that are filled with people that have passion and empathy in the work and make it easy for people that want to help to get involved.

In the developed world, Pediatric Cancers are the #1 Cause of Death of children. Secondly, every major advancement in the treatment of adult cancers has come from research and knowledge learned in the treatment of children.

People say things to me like “How do you do it?” or “I couldn’t do that” but the truth is, you could! For your child, you will do anything to prevent one second of unpleasantness. What if months of pain and suffering are the only path to a life with them? Can you endure that?

Take a moment in a quiet place and close your eyes and imagine your kids when they are little and kissing your child goodnight and having to wonder if that might be the last time. Combine that fear with the helplessness you feel as a parent having to watch your child endure a treatment of 15 surgeries and 270 weeks of toxic chemotherapy and not knowing if all that is even enough for them to survive. You might have to do this for the next ten years.

I do not think about the things lost; or what the future holds. I think about the moments gained. I would not ask you to switch places with us. I do not harbor jealousy that YOUR child is healthy and I pray that no other child will ever feel the pain and suffering mine has.

I will not ask you what you are willing to do today to save my child? Instead, I will ask you today what you are willing to do to save your loved ones. I was just like you, I was not a cancer parent, until that one day when I suddenly was.

Will you please join Jack’s fight to cure Pediatric Cancers by funding the very best research in the world.

Jack is a 4th grade student in Mr. Denisson’s class at CSI.

Childhood Cancer and Family Finances

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Yacht Cruise Photo

Photo by Catherine Lepone

FAMILY FINANCES

We came across this article and it tells a sobering story. This is why Making Headway Foundation is proud to help families who have a child diagnosed with a brain or spinal cord tumor.  See link below.
https://www.nlm.nih.gov/medlineplus/news/fullstory_154781.html