Head To The Hill

On Tuesday, April 9th, Making Headway participated in Head to the Hill, an advocacy day on Capitol Hill to support funding for brain tumor research.  The event was organized by the National Brain Tumor Society, who provided training and coordinated all office visits.  Over 300 people, from nearly every state in the union, joined together to educate and lobby their own Senators and members of Congress.  Almost everyone had a direct, personal connection to somebody with a brain tumor either as a parent, spouse, or as a survivor.  As the group collectively prepared the day before, they shared intimate stories of grief, struggle, courage, and hope.  Each participant embodied a strong passion to make a difference for those with brain tumors and Head to the Hill provided an empowering opportunity to make a difference.

Over the past 20 years, there have been astounding advances in technology and medicine.  However, the complexities of brain tumors, combined with a lack of funding, have resulted in no significant new treatments for patients.  There are over 700,000 people living with a brain tumor, and 30,000 of them are children.  Only through appropriate national funding can scientists make impactful discoveries.

The goals of the day were straightforward.  Participants would advocate for two tangible legislative actions. The first was a $2 billion increase in the overall budget of the National Institute of Health (NIH).  The NIH is the most important research organization in the country.  Their researchers are not political and are not trying to make any money; they just want to improve the health of all Americans.  The largest part of the NIH is the National Cancer Institute (NCI), which focuses on the science, prevention, treatment, and cure for cancer.  Adult brain tumors are relatively rare, compared to other types of cancer, and most pharmaceutical companies do not see potential profit in investing in this area, making funding from the NIH all the more important.

The second goal was the passage of the Childhood Cancer STAR Act.  This act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors.  For pediatric brain tumor patients, it would also create a database of brain tissue samples that would encourage and improve a variety of medical research programs.  The STAR Act, combined with Cancer Moonshot, will fundamentally improve the way that information is shared and medical progress is achieved.

For our part, Making Headway was there to represent the needs of children with brain tumors, as well as their parents, friends, and communities.  Our New York group advocated honestly and passionately at the offices of Sen. Kirsten Gillibrand, Sen. Charles Schumer, Rep. Elise Stefanik , Rep. Nita Lowey, and Rep. Tom Reed II.  We were very pleased to hear strong support from each office and are encouraged that these efforts have a chance to really help those with a brain tumor. 

Making Headway was proud to be part of Head to the Hill.  We are grateful to everyone who participated and for the opportunity to make so many new friends.  Through our collective efforts we are making a difference, we are shaping the future, and we will find new treatments and a cure for pediatric brain and spinal cord tumors.

It is critically important for people to advocate to their members of Congress for the causes you care about.  If children with brain tumors are one of those causes, please contact your Congress members to encourage their support of the NIH and the STAR act.

Making Headway Special Events

One Life Club of Scarsdale High School
Sunday, May 17, 2015
828 Scarsdale Avenue
Scarsdale, NY

Arrive at 12:45 p.m.
Entry Fee $30
To donate or register:

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

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!

Christian at the cruise

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.

Christmas Eve Reflections

In listening to the score of my favorite movie, you may be surprised to know that the song I love the most is not the title Song, White Christmas.  It is the song that Bing Crosby sings to Rosemary Clooney.  ”If you’re worried and you can’t sleep, just count your blessings instead of sheep, and you’ll fall asleep counting your blessings.”  Such a perfect sentiment over the holidays, don’t you think?

The Mark of Zorro – February 10


Making Headway invites you to an afternoon of high-speed horse chases, rooftop battles and forbidden romance. Watch as a magnetic trio of actors brings the legendary Zorro to life, swinging his way to justice in the perfect adventure for your young heroes.

En Garde! If you cannot attend, please consider a donation so that we may invite patient families.

Online donations or ticket orders https://mkghdwyf.ejoinme.org/Zorro


Thank you Chappaqua Rotary

Catherine Lepone of Making Headway Foundation

It was my pleasure to speak at the Chappaqua Rotary yesterday about the work of Making Headway Foundation.  Everyone was so gracious and attentive to our story.  We are excited to have new friends from our hamlet of Chappaqua.

Thank you to Ann Herrero of Edward Jones for inviting me to make a presentation to her fellow Rotarians.  We met through the Chappaqua Millwood Chamber of Commerce.