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

Making Headway Special Events

One Life Club of Scarsdale High School
SPIN A THON
Sunday, May 17, 2015
Flywheel
828 Scarsdale Avenue
Scarsdale, NY

Arrive at 12:45 p.m.
Entry Fee $30
To donate or register:
https://mkghdwyf.ejoinme.org/?tabid=685613

Nicky and Thomas Docu Memorial Golf Outing
Friday, June 5, 2015
Pelham Bay and Split Rock Golf Course
Bronx, NY

Family Fun Day for Patient Families
Sunday, June 7, 2015
Life the Place to Be
Ardsley, NY

Sparkle for a Cause
Tuesday, September 8, 2015
Crabtree’s Kittle House
Eleven Kittle Road
Chappaqua, NY

Annual Yacht Cruise for Patient Families
Sunday, September 20, 2015

Brian McCabe Drive for a Cure Golf Outing
Monday, October 5, 2015
Pelham Bay and Split Rock Golf Course
Bronx, NY

For information on any of our events,
contact Making Headway Foundation
914-238-8384

Innovation and Funding Research

It takes many different approaches to raise the funds necessary to cure pediatric brain cancer.  The state of Missouri created a Pediatric Cancer Research Trust Fund under the newly enacted Sahara’s Law.  It had an excellent first year.

Read how they did it here.  http://www.semissourian.com/story/2164379.html

            Maybe New York could be next?

 

Survival and Inspiration

John Mordach

Photo is copied from the article in the Chicago Tribune.

We always want to hear inspiring stories from those who survive brain cancer.  Children with brain and spinal cord tumors are so resilient, brave and strong.  Sometimes, in the throes of treatment, it’s hard to remember that there is going to be a light at the end of the tunnel for most patients.  Here is a phenomenal story from the Chicago Tribune about one young man’s story.

CLICK HERE FOR THE FULL STORY  http://www.chicagotribune.com/sports/college/ct-uic-swimmer-brain-tumor-spt-0215-20150214-column.html#page=1