About Catherine Lepone

I am the Executive Director for Making Headway Foundation. An organization dedicated to the care, comfort and cure of children with brain and spinal cord tumors.

Head To The Hill

On Tuesday, April 9th, Making Headway participated in Head to the Hill, an advocacy day on Capitol Hill to support funding for brain tumor research.  The event was organized by the National Brain Tumor Society, who provided training and coordinated all office visits.  Over 300 people, from nearly every state in the union, joined together to educate and lobby their own Senators and members of Congress.  Almost everyone had a direct, personal connection to somebody with a brain tumor either as a parent, spouse, or as a survivor.  As the group collectively prepared the day before, they shared intimate stories of grief, struggle, courage, and hope.  Each participant embodied a strong passion to make a difference for those with brain tumors and Head to the Hill provided an empowering opportunity to make a difference.

Over the past 20 years, there have been astounding advances in technology and medicine.  However, the complexities of brain tumors, combined with a lack of funding, have resulted in no significant new treatments for patients.  There are over 700,000 people living with a brain tumor, and 30,000 of them are children.  Only through appropriate national funding can scientists make impactful discoveries.

The goals of the day were straightforward.  Participants would advocate for two tangible legislative actions. The first was a $2 billion increase in the overall budget of the National Institute of Health (NIH).  The NIH is the most important research organization in the country.  Their researchers are not political and are not trying to make any money; they just want to improve the health of all Americans.  The largest part of the NIH is the National Cancer Institute (NCI), which focuses on the science, prevention, treatment, and cure for cancer.  Adult brain tumors are relatively rare, compared to other types of cancer, and most pharmaceutical companies do not see potential profit in investing in this area, making funding from the NIH all the more important.

The second goal was the passage of the Childhood Cancer STAR Act.  This act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors.  For pediatric brain tumor patients, it would also create a database of brain tissue samples that would encourage and improve a variety of medical research programs.  The STAR Act, combined with Cancer Moonshot, will fundamentally improve the way that information is shared and medical progress is achieved.

For our part, Making Headway was there to represent the needs of children with brain tumors, as well as their parents, friends, and communities.  Our New York group advocated honestly and passionately at the offices of Sen. Kirsten Gillibrand, Sen. Charles Schumer, Rep. Elise Stefanik , Rep. Nita Lowey, and Rep. Tom Reed II.  We were very pleased to hear strong support from each office and are encouraged that these efforts have a chance to really help those with a brain tumor. 

Making Headway was proud to be part of Head to the Hill.  We are grateful to everyone who participated and for the opportunity to make so many new friends.  Through our collective efforts we are making a difference, we are shaping the future, and we will find new treatments and a cure for pediatric brain and spinal cord tumors.

It is critically important for people to advocate to their members of Congress for the causes you care about.  If children with brain tumors are one of those causes, please contact your Congress members to encourage their support of the NIH and the STAR act.

Making Headway Awards Grants to Children with Brain Tumors

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

“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

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

Press Release

Making Headway Foundation Awards Research GrantsPhoto by Catherine Lepone

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.

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The Story of Jack

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

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

Yacht Cruise Photo

Photo by Catherine Lepone

Failure to Thrive

Butterfly

Our daughter Marta Helena is a cancer survivor. Like her grandmother Barbara, she had been diagnosed with this heinous disease. At twenty-three months old Marta had to undergo aggressive chemotherapy and radiation therapy to shrink a malignant brain tumor that was inoperable. The treatment was successful and now, at twenty-one years old, she has lived a basically normal, healthy life.  What is different about Marta’s situation is that she beat the odds against her to survive.

In effect, she was born with a malignant brain tumor, that went undetected as
there was no reason to suspect anything. Then as various symptoms slowly
presented, we found out the worst. A neurologist diagnosed a fast spreading form
of cancer in the central nervous system. There was a tumor that had begun in the
brain and then lodged into other parts of the nervous system. It was called
‘medulloblastoma’ and the prognosis was dismal. This was beyond frightening, it
was paralyzing.

Flower

Perhaps the disease was caught sufficiently early, maybe divine spirits tookcontrol from the other side or just possibly, science had advanced enough to make the difference between life and death in our child’s fragile life. When I read the ‘failure to thrive’ diagnosis that her pediatrician wrote in the space for the reason for the MRI, it was like a knife through my heart. What about all of the prenatal care during my pregnancy? Yes, I was approaching forty and I took those huge prenatal vitamins, and radically changed my diet to include mostly veggies and fruits. [Yes I had those strange cravings as well. I wanted coffee ice cream ALL OF THE TIME and some bizarre combinations of food.] Yet for all of my healthy eating and careful food choices, I gained sixty pounds instead of the typical fifteen.  Looking back, I suppose at some deep level, I was ensuring to eat enough so that no doctor could ever accuse me of causing my child to ‘fail to thrive’…

To appreciate how far Marta has come, in terms of how she has flourished, advanced, maintained health and an excellent level of quality of life, you must understand the progression of events. Finding out what plagued Marta, at the tender age of two years old was a long and painful process for everyone in our family.

Our little girl achieved all of the early childhood milestones, and on time.
For example, she crawled, babbled, sat up, drank from a cup, stood-up, took first
steps, and glided through rooms while holding on to various objects. Eventually
early speech emerged, with simple syllables, da, da dada. Alright, the ‘d’ sound is
easier to pronounce than the ‘m.’ So no ‘mama’ just yet…

Seascape

However, several months into her second year, her physical and mental skills seemed to completely shut down. No amount of encouragement could motivate her to talk, walk, speak or eat in the way she had learned. She only wanted to drink a juice bottle and rock in her infant seat. It was at this point we sought professional advice.

This began with a many appointments with different physicians to relate Marta’s health history. Our personal pediatrician is a wonderful, helpful and astute professional. He realized though a more specialized opinion would be needed to investigate her ‘failure to thrive.’ He led us to our local university hospital to begin with an MRI study, and it was there we were told the diagnosis every parent dreads. The radiologist said “your child has a large, malignant tumor” and “she will need to stay here until a more exact diagnosis and treatment plan can be made.”  My husband and I decided to take Marta out of that hospital and brought her to one that was better known to diagnose and treat this particular type of childhood cancer, called ‘medulloblastoma.’

October of 1995 was an eventful month for our family in that many life
altering decisions had to be made, and quickly. My husband and I whisked
Marta out of that facility. We brought her to a hospital that was better known to
diagnose and treat her particular type of cancer: New York University Hospital,
with a superb pediatric neurological unit. The well-known team of surgeon Fred
Epstein and oncologist Jeffrey Allen took charge of our daughter’s health care. It
was beyond difficult to turn our child over to them, however essential.

Her journey to wellness was arduous. There were so many details to be
mindful about that it felt as though I was leading an orchestra. The doctors, the
specialized nurses, the social workers and aides all did their parts to help heal her
but it was I who kept track of the correct medications given day and night and the
wheel well greased so that we could continue on. Finally in March of 1997, two
years after initial diagnosis, my husband and I made a huge decision. Our Marta
had been through so much, enough was enough, and it was time to get her home.
No more treatments, no more MRIs, no middle of the night temperature checks and
no people in white jackets and stethoscopes around the neck. Come what may, our
daughter needed to be at home, full time. We had her discharged ‘ama’ (against
medical advice) and never looked back on the long ride home.

During that year and the next, we happily and completely over-protected her, keeping her safe, warm and well fed. She healed, she began to eat better and was very happy to be home. She was home-schooled by a special education teacher and speech therapist for almost two years before we felt confident about her entering public school kindergarten. Her hair began to grow back and that summer we had the best and happiest birthday party a four year old ever had…                    A New Beginning

Reauthorization of the Creating Hope Act Passes in the House

From our good friends at Kids V. Cancer…  This is an excellent way to ensure more funding for pediatric cancer research.

CHOP

Photo borrowed from Children’s Hospital of Philadelphia website.

 

Reauthorization of the Creating Hope Act Passes in the House

July 11, 2015

Dear friends,

Great news. Yesterday, the House of Representatives voted to reauthorize the Creating Hope Act when the House passed the 21st Century Cures Act, H.R. 6.

We want to thank Chairman Upton, Congresswoman DeGette and their colleagues for their leadership on 21st Century Cures. 21st Century Cures Act will also increase funding for medical research and innovation at the NIH and FDA, strengthen compassionate use with the Andrea Sloan Compassionate Use Reform and Enhancement (CURE) Act, support the National Pediatric Research Network Act and further rare disease drug development in the OPEN Act.

We want to extend a very special expression of appreciation to Congressman Butterfield, Congressman McCaul, and their staff, Saul Fernandez and Andy Taylor, respectively for their leadership in the Creating Hope Act reauthorization. This victory is theirs.

The Creating Hope Act has wildly exceeded expectations in providing incentives for companies to develop drugs for kids with cancer and other life threatening illnesses. Sanofi recently purchased a Creating Hope Act priority review voucher for $245 million and three new drugs for seriously ill kids have come to market, including Unituxin by United Therapeutics for a pediatric cancer.

We look forward to working with the Senate on the reauthorization of the Creating Hope Act and on the Kids Innovative Drugs Initiative which is designed to increase access to drugs for pediatric cancer research. In that regard, we also look forward to engaging pediatric oncologists to help them access drugs for their own preclinical and clinical research.

 

 

Save the Date – Brian McCabe Drive for a Cure

Mike McCabe and a fellow golfer enjoy the reception following golf.

FORE!
It’s almost time for the
4th Annual Brian McCabe
“Drive for a Cure” Golf Outing
Monday, October 5, 2015

Pelham Bay/Split Rock Golf Courses
Bronx, NY

This event benefits, Making Headway Foundation

For information, contact:     Catherine Lepone catherine[at]makingheadway.org