Student Athletes Raises Funds for Cancer Research, Let’s Help

Millennials have been called many things, but they aren’t often acknowledged for their consistent and generous support for charities. This passion to give back is exemplified in the upcoming 4th Annual Greeley All-Athlete Walkathon.  More than a dozen local athletic teams are coming together to support Making Headway and Pediatric/Adolescent cancer research and programs that assist these children and their families.   Help support their effort by attending the event or donating to the cause.  To donate or learn more, visit www.makingheadway.org/greeley. #giving

Fairytale Yoga – Making Headway Program Highlight

Over the years, Making Headway has developed a variety of unique and creative programs to help children who have been diagnosed with a brain or spinal cord tumor.  Fairytale Yoga is a one-of-a-kind program designed specifically for children impacted by chemotherapy. Through this program, our instructor, Annie Hickman is able to bring a special joy to children and their families (as well as the doctors and nurses).  The children love to explore playful movements with their bodies. Children run in circles, dance with silk butterfly wings, play yoga games, and make music with Tibetan singing bowls. Fairytale yoga helps transform an environment that is often filled with fear and uncertainty, into a place of hope and love.  Bringing these types of programs to families impacted by pediatric cancer is a core part of the Making Headway Foundation.

September is National Childhood Cancer Awareness Month

September is recognized as National Childhood Cancer Awareness Month, but Making Headway knows that Childhood Cancer impacts families every day of the year. Over 15,000 children are diagnosed with cancer every year; approximately 1/4 of them will not survive the disease. Making Headway’s mission focuses on the most common and dangerous type of cancer, pediatric brain and spinal cord tumors.

Childhood cancer may seem like an overwhelming topic, but if we really want to make a difference, we all need to help. There are so many ways that you can help children with cancer.

* Make a Contribution: 90% of the funds that support Making Headway comes from individuals like you. These donations support all of our programs that assist children with a brain or spinal cord tumor. Make a donation today in honor of Childhood Cancer Awareness month.

* Volunteer:  Service providers and hospitals are always looking for dedicated volunteers to help in a variety of capacities. To find your opportunity, search for a local service organization, hospital, or contact Making Headway at 914-238-8384.

* Advocate: Making Headway is working with local and national organizations to advocate for additional funding for medical research and a system to better assist children and families. Learn how you can help.

* Spread the Word: Forward this page to your family, friends, and co-workers. We all have to get involved to provide Care, Comfort, and a Cure for families impacted by pediatric brain and spinal cord tumors.

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!

Childhood Cancer and Family Finances

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

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 took control 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

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?

You only live once.

I was visiting with a young brain cancer patient at the hospital the other day. A candy basket was passed around the Play Room where she was waiting to see the doctor. We were doing a craft project together.

She looked in the candy basket and spotted a mini Nestle Crunch bar. “Oh, boy! Those are my favorite!”, she exclaimed. I said, “I love those too.” She asked if I wanted one. I said, “I don’t know. It’s candy and I have lunch soon. Maybe I shouldn’t.” (Also thinking of the calories…) That seemed silly in the face of the sickness so evident in this young girl. So I said, “Should I?” She replied, without hesitation, “You only live once, Catherine.” Wow! Maybe that’s a lesson we can all learn…to live in the moment. Enjoy life as it is. Find the little joys wherever you find them.

I thank her for inspiring me to count my blessings.

Catherine Lepone, Executive Director, Making Headway Foundation