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

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

 

New Year, New Resolve

With a new year always comes new resolve and dedication.  2015 is no different.  There are too many children that we lose around the holidays from the evil thing known as brain cancer.  And yet, we are full of hope as we receive applications for research grants, reports of successes with new treatments and news of all of the hopeful futures that our children enjoy since they have beaten their own form of pediatric brain cancer.

So Making Headway Foundation starts the new year with renewed commitment to help and fight for better treatments and cures.  In the meantime, we want to make life better for all of those who have been touched by childhood cancers.  We look forward to having your support as we do our work…not work, really.  It’s a mission that we embrace with love and affection for all of those who cross our paths and enrich our lives by their courage.

In memory of our friend,
Peter H.

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

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All Work and No Pay?

15 year old brain tumor survivor hosts fundraiser and gives back to the tune of $12,000!

Making Headway Foundation is lucky to have many volunteers.  They are always ready to help when asked, and frequently offer to help when not asked.  Take the case of grateful patient families who want to help our Foundation so that others can benefit from our services the way they have benefited.  

Why do all this work for no pay?  

Just take a look at the smiling faces of some of these recent volunteers and you can see why.  Their lives are richer for having helped others.  Pride and happiness are always very apparent at each of our events.  All work and no pay makes volunteering a joy!

From a Parent’s Perspective

Making Headway Foundation patient family member and long time volunteer, Peggy Fischer, wrote a beautiful article about her experience as a mother of a brain tumor patient.  Entitled, Hope in the Darkest Hour, and published in TheAlternativePress.com, her story is an inspiration to others.  We hope you will enjoy reading it.

http://thealternativepress.info/columns/advocating-for-children/articles/hope-in-the-darkest-hour

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.

College or Vocational School Scholarships available

Making Headway is fortunate to have The Scott J. Reisser Memorial Scholarship Fund. Established in 2007, the fund is the culmination of Scott’s family’s efforts to establish a fitting memorial for their beloved son, brother, grandson, nephew and friend to so many. Scott’s most cherished dream was to graduate from college, a milestone that he fell just short of achieving. After his death in 2006, it was clear that a vehicle to help other young brain tumor survivors achieve their educational goals was the most fitting memorial.

The Reisser family has generously agreed to award up to two scholarships again this year. As there are many deserving applicants, Making Headway will offer up to two additional scholarships. Each of the scholarships will be a one-time award of $5,000 paid directly to the institution.

To be eligible for consideration, each applicant must be a brain or spinal cord tumor survivor, a resident of NY, NJ or CT and is either attending or has been admitted to a 4- or 2-year college or vocational program. If your child would like to apply, please CONTACT US.  The deadline for the applications to be submitted is May 1, 2014. The Scholarship Committee will review all applications and select the recipients by July 1, 2014.