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