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
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
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.
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.
Better imaging is one key to better treatments. Here is an exciting story about a new “molecular flashlight” being developed so that imaging of medulloblastomas in children will be more accurate. This will enable treatment to be carefully targeted.
Click this link to read the article: http://med.stanford.edu/ism/2013/august/flashlight.html
MAKING HEADWAY FOUNDATION HONORED AS 2013 TOP-RATED NONPROFIT
New GreatNonprofits.org Award is Based on Positive Online Reviews
Chappaqua, NY (August 9, 2013)–Making Headway Foundation announced today that it has been honored with a prestigious 2013 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.
“We are excited to be named a Top-Rated 2013 Nonprofit,” says Catherine Lepone, Executive Director. We are proud of our accomplishments this year, including our commitment to fund a $1 million grant to a new neuro-oncology laboratory at NYU Langone Medical Center as well as our many supportive services for children in the metropolitan area who are battling brain and spinal cord tumors.”
The Top-Rated Nonprofit award was based on the large number of positive reviews that Making Headway Foundation received – reviews written by volunteers, donors and clients. People posted their personal experience with the nonprofit. For example, one person wrote, “The Making Headway Foundation changes lives every day. The volunteers and professionals involved with this non-profit are caring, committed, and tops in their respective fields – seeking constantly to improve the quality of life for children with brain tumors and their families and caregivers.”
While the Top-Rated Awards run through the end of October, Making Headway was part of the inaugural group to qualify for the year.
“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.
About Making Headway Foundation 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. www.greatnonprofits.org
We just caught this talented young man on Fox 5 Good Day NY. He was touched by a friend who had cancer and he wrote this incredible song.
Making Headway Foundation thanks you so much for raising awareness about children’s cancer. @rosannascotto @audreypuente @gregkellyfox5 @jakemillermusic
Check it out! MUSIC VIDEO LINK http://youtu.be/oGGs65J3UEA
Cool Kids Connection is a one-of-a-kind printed newspaper published quarterly by Cool Kids Campaign and mailed to over 130 children’s hospitals nationwide. The Connection’s goal is to provide the thousands of pediatric oncology patients with a newspaper they can relate to, stuffed with stories and photos of other kids and families in the same predicament.
CHECK IT OUT! AT: http://www.coolkidscampaign.org/what-we-do/connection-newspaper/
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