Program Highlight – Playroom Improvements

A hospital can be a scary place for a child, especially for pediatric cancer patients. Recent studies have proven what Making Headway has known for decades: the hospital’s physical environment affects the patients’ experiences, emotional needs, and health outcomes.  Every child at the Hassenfeld Children’s Center is able to benefit from the enhanced playroom and activities supported by Making Headway. Through our programs, Making Headway has transformed the halls and the playroom into a fun, healthy place for children and families. On any given day, children of all ages and backgrounds can be found happily absorbed in arts and crafts activities, games, or munching on healthy, delicious snacks. Professional entertainers and child therapists are also part of the playroom team, helping the whole family feel comfortable, relaxed and welcome.

Research Highlight: Cutting Edge Program funded by Making Headway

Dr. Daniel Reinberg is one of the most respected and accomplished medical investigators in the country and Making Headway has agreed to fund his latest research project. This unique research project focuses on a devastating type of pediatric brain tumor known as Diffuse Intrinsic Pontine Gliomas (DIPGs). Despite recent advances in diagnosis and treatment, the majority of children diagnosed with DIPG die within 24 months of diagnosis. Through a grant by Making Headway, Dr. Reinberg and his team are studying specific  compounds that block the ability of certain proteins that bind to a specific epigenetic signature, known as dimethylation of histone H3 on lysine residue 36 (H3K36me2). It’s a lot more complicated than that, but in the end, these compounds are very promising therapeutics for the treatment of this deadly childhood malignancy.   Learn more at http://makingheadway.org/research.

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.

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

Top Rated Award Logo

MAKING HEADWAY FOUNDATION HONORED AS 2014 TOP-RATED NONPROFIT GreatNonprofits.org Award is based on Positive Online Reviews

Chappaqua, NY (August 13, 2014) – Making Headway Foundation announced today that it has been honored with a prestigious 2014 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.

We are excited to be named a Top-Rated 2014 Nonprofit,” says Catherine Lepone, Executive Director of Making Headway.  “We are proud of our accomplishments this year, including the support of research initiatives and our continued commitment to provide programs and family activities that raise the quality of life for children with brain or spinal cord tumors.”  The Top-Rated Nonprofit award was based on the large number of positive reviews that Making Headway received – reviews written by volunteers, donors and clients. People posted their personal experience with the nonprofit. For example, one person wrote, “Making Headway Foundation does a great job of lifting the spirits of those families going through such difficult times. Pediatric cancer does not only affect the child suffering, but affects the entire family, and Making Headway Foundation helped me personally through my brother’s loss. I am forever grateful for the impact this foundation has had in my life.”

While the Top-Rated Awards run through the end of October, Making Headway was part of the inaugural group to qualify for the year. In addition, they’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years.

“Savvy donors want to see the impact of their donations more than ever,” said Perla Ni, CEO of GreatNonprofits, “People with direct experience with Making Headway have voted that the organization is making a real difference.”

Being on the Top-Rated list gives donors and volunteers more confidence that this is a credible organization. The reviews by volunteers, clients and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community.  Making Headway Foundation provides care and comfort for children with brain and spinal cord tumors while funding medical research geared toward better treatments and a cure.

About GreatNonprofits

GreatNonprofits is the leading site for donors and volunteers to find reviews and ratings of nonprofits. Reviews on the site influence 30 million donation decisions a year. V

Media Contact  Catherine M. Lepone, Executive Director, 914-238-8384

A Mother’s Story

In March of 1998, a heart wrenching story appeared in the Health Living Digest, part of the Anton Community Newspapers.  As we approach the 17th Annual Tulip Festival Dinner (benefiting Making Headway Foundation), it bears repeating why we started this event in the first place with the story of Allison E. Trunz.  The article was called, “A Mother’s Story” and here are some excerpts.

“Allison had within her brain a very large primitive neuro ectodermal tumor, that not only had calcified, but had spread to the left side of her brain….She simply had too many strikes against her.”  The doctors told them, ‘Think about how you want to spend the little time you have with her.’  Who of us could withstand the heartbreak and sorrow of such a pronouncement?  While the Trunz family searched for answers, they came to understand that even with the best treatment, that their daughter’s fate was determined and the treatments that showed so much promise were just not working.  As her mother, Jeannie, finally recounted in the article, “On August 12, 1997, after amazingly clearly listing all those people she loved and singing You Are My Sunshine to her parents, Allison quietly died at home.”

The Trunzes immediately started to work with the Founders of Making Headway Foundation, Edward and Maya Manley, to host an event that would both honor Allison and raise funds so that other children could be helped by the Foundation’s work.  The 2014 “All-is-onE” Tulip Festival Dinner and Casino night will be held on May 14 at the Swan Club in Roslyn, NY.

To read the entire article https://www.dropbox.com/s/3ynvzaxtpoyojrr/A%20Mother%27s%20Story%20-%20Trunz.pdf

#Tulip2014 – For tickets or to donate to this event, please go to www.bit.ly/Tulip2014

Pediatric Neuro-Oncology Research

The field of pediatric neuro-oncology research is considered to be in the “rare disease” category.  How do we tell the thousands of patients newly diagnosed this year that they need to wait?  One component of our Making Headway Foundation mission is to advance toward better treatments and a cure.  We will try to forward articles of interest on recent advances in this field.  If you have any news to report, let us know!

In the meantime, here is something which may interest you.

Ependymoma is an aggressive type of brain cancer that primarily affects infants. Scientists from the German Cancer Research Center (DKFZ) and Heidelberg University Hospital have carried out a comprehensive molecular analysis of these tumors.  Here is an article on their findings.

http://www.dddmag.com/news/2014/02/new-therapy-targets-dna-tags-aggressive-brain-cancer

Making Headway has not evaluated the information provided here.  It is presented for informational purposes only.

3 weeks until #GivingTuesday.

Here is what one parent said about the work of Making Headway Foundation.

“Making Headway is a loving caring group of folks who always remember that our kids are just kids. Maybe extraordinary kids, but they need the same love, care and fun that all kids should get.”

Please remember to give during this holiday season.  Help children and families who have pediatric brain and spinal cord tumors.

Online donations can be made at:  http://bit.ly/GivingTuesday2013

THANK YOU, from all of us.