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
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.
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.
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.
Making Headway Foundation Family Yacht Cruise (Sept. 2013). Photo by Catherine Lepone
As the new year begins, thoughts go to those we have lost in the past year. Children like Christian, pictured here. These young people so profoundly touch our lives and create incredible impact on us when they may not even know it. Young Christian had that effect. A sweet young boy fighting a terrible illness. He died just three months after this photo was taken. As we begin 2014, let’s all keep sight of our mission… to provide care and comfort to children with pediatric brain and spinal cord tumors while funding research into better treatments and a cure. With everyone’s help, we can make great strides this year. We are grateful for your support.
Today we got this note from a grateful parent. It makes us so proud of our work.
“We cannot thank your foundation enough! You provided critical care for our son after his brain tumor surgery and subsequent proton beam radiation treatments at Mass General in Boston. What an awesome organization. We love you and are forever grateful Making Headway!”
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. For more information about our services, please contact us at 914-238-8384.
Today is #GivingTuesday
We all hear it. Time and time again. “What do I/you want for Christmas?” What should I give? Following Black Friday and Cyber Monday is today, GivingTuesday. This is to remind us that it is better to give than receive and that there are always those who are less fortunate than we are.
At Making Headway Foundation, our wishes are for children who don’t need brain surgery, chemo, wheelchairs and feeding tubes. That they can grow up and go to college, raise families and help others. That’s what we want. Will you help?
Your donation will be gratefully accepted at: http://bit.ly/GivingTuesday2013 
Thank you from our patients and their families.
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.
Making Headway Foundation frequently meets patient families who are dealing with low grade gliomas. Studying the genetic pathways of these tumors may give us the clue to a better treatment. Here is an article about this.
http://www.redorbit.com/news/health/1112997071/pediatric-brain-tumors-genetic-pathway-110713/
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