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:

THANK YOU, from all of us.


Giving Tuesday December 3

What is #GivingTuesday?

We have a day for giving thanks. We have two for getting deals. This year help us create #GivingTuesday. A new day for giving back.  On Tuesday December 3, 2013, global charities, families, businesses, community centers, students and more will come together to create #GivingTuesday.

It’s a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something more. Then tell everyone you can about how you are giving. Be a part of a national celebration of our great tradition of generosity.

Please remember Making Headway Foundation on December 3.  You may donate via our website at

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.


Social Security Disability Benefits for Children with Brain and Spinal Cord Tumors

Special thanks to Molly Clarke for this submission on Social Security benefits for your children.  She is with Social Security Disability Help which is a for-profit organization that offers free resources and services to individuals who wish to apply for disability benefits.  Making Headway Foundation has not evaluated the material below and does not endorse Social Security Disability Help.  We are merely providing this information as a service to our readers. Security Disability Benefits for Children with Brain and Spinal Cord Tumors

 As a parent of a child with a brain or spinal cord tumor, you likely focus most of your energy on keeping your child comfortable, happy, and healthy. Unfortunately, expensive medical treatment combined with time spent away from work can cause significant financial distress.

If you find yourself struggling to maintain financial stability while caring for your child, you may be eligible to receive Supplemental Security Income (SSI) benefits on behalf of your child. These benefits can help cover everything from medical expenses to the expenses associated with daily living. The following article will provide you with a general overview of the SSI program and will help prepare you to begin the application process.

Supplemental Security Income

Supplemental Security Income (SSI) is a disability benefit program offered by the Social Security Administration (SSA). SSI is intended to provide benefits to disabled individuals who earn very little income. To qualify, applicants must fall within very strict financial limits.  Because children do not earn income and are not responsible for finances, child applicants will be evaluated based on a portion of their parents’ income and resources.  This is called deeming. To learn more about deeming and SSI, visit the following page:

Applicants who qualify for SSI benefits also automatically qualify for Medicaid. Even if the SSA eventually determines your income no longer fits the parameters for SSI benefits, your child may still be able to retain Medicaid coverage.

Medical Eligibility

 In addition to SSI technical criteria, applicants must also meet certain medical criteria.  These criteria are listed in the SSA’s guidebook of medical conditions and requirements. This guidebook is most commonly referred to as the Blue Book.

Most brain and spinal cord tumors fall under Blue Book listing 113.00—Malignant Neoplastic Diseases. Some of the most common tumors—medulloblastoma and glioblastoma multiforme, among others—are named in this section. In general, the SSA evaluates all malignant neoplastic diseases using the following criteria:

  • The origin of the malignancy.
  • Extent of involvement.
  • Duration, frequency, and response to antineoplastic therapy.
  • Effects of any post-therapeutic residuals.

In most cases, benefits are awarded with medical confirmation of diagnosis and medical confirmation that the tumor has advanced despite treatment.

Brain tumors are also listed under Blue Book listing 111.00—Neurological Disorders and are evaluated based on impaired neurological functioning. This may include convulsive or non-convulsive epilepsy, motor dysfunction, and communication impairment.  Additionally, your child may qualify under Blue Book Listing 112.00—Mental Disorders if a spinal cord or brain tumor has resulted in intellectual disability, mood disorder, or other mental impairment.

View all Blue Book listings, here:

In some cases, childhood brain or spinal cord tumors will be eligible for Compassionate Allowance processing. The Compassionate Allowance program was established to help individuals with severely debilitating conditions to receive disability benefits in as little as ten days. Childhood brain and spinal cord tumors that are eligible for Compassionate Allowance processing include the following:

  • Astrocytoma (Grades III and IV)
  • Ependymoblastoma
  • Malignant Brain Stem Gliomas
  • Glioma (Grades III and IV)
  • Malignant Germ Cell Tumors
  • Child Neuroblastoma
  • Primary Central Nervous System Lymphoma

For a complete list of Compassionate Allowance conditions, visit the following page:

The Application Process

For child applicants under the age of 18, the application process consists of several forms and a mandatory interview with an SSA representative. Although a portion of the paperwork can be completed online, many parents prefer to complete all forms during their child’s interview.

To begin, you should call the SSA immediately to schedule your child’s interview. Due to the high volume of new applicants, you may have to wait several months before the next available appointment opens up.  If your child has a Compassionate Allowance condition, the wait time will be significantly shorter.

While waiting, it is important that you use the time to prepare for your interview. This should involve collecting all of the required medical and non-medical documentation that will be used to support your child’s claim. Prepare records of medical appointments, findings of physical examinations, findings of mental examinations, records of diagnoses, treatment results, and statements from professionals who interact with your child on a regular basis who can attest to the limitations caused by your child’s condition.

If you find that you cannot track down the required information before your interview, keep your appointment anyways. Although missing information may cause delays, the SSA will help you to collect any documents that you have missed.

Receiving a Decision

If your child qualifies for Compassionate Allowance processing, you may receive a decision in as little as ten days. If your child’s condition does not qualify for Compassionate Allowance processing, you will not receive a decision for several months.

If your child’s initial application is denied, it is important that you do not panic or give up. Although being denied can be discouraging, it is certainly not the end of the road. You have the right to appeal this decision within 60 days of receiving your notice of denial. The appeals process gives you the opportunity to strengthen your child’s claim and correct any mistakes that have been made. Statistics have shown that many more applicants are approved during the appeals process than during the initial application.

For more information about the appeals process or about SSI benefits in general, visit the Social Security Disability Help blog ( or contact Molly Clarke at

Fall Fun and Fundraising with Making Headway Foundation

2nd Annual Brian McCabe Drive For A Cure Monday, October 7, 2013

Split Rock/Pelham Bay Golf Course


MTK Tavern Fundraiser in Mount Kisco – Hosted by Dylan Witt and Margie Strelzyn-Witt Friday, October 11, 2013 8 pm – 12 am (Band starts at 8:30 pm)


Mount Everest


In conjunction with the Claudio Reyna Foundation, Tom O’Connell will support the work of Making Headway by climbing to the base camp of Everest while getting support from friends and colleagues.


Promising treatment for pediatric brain tumor patients

Making Headway Foundation just came across this interesting article about proton therapy for pediatric brain tumor patients.  This study came out of Massachusetts General Hospital in Boston and is worth a read. Outcomes seem very hopeful.–+Behavior%29

SOURCE:  American Society for Radiation Oncology (ASTRO) (2013, September 23). Encouraging outcomes for pediatric brain tumor patients

Making Headway Honored


New 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.

What is a vacation?

Patient on pony

Patient enjoys a pony ride at Family Fun Day 2013.

While many of us plan a week or two away from the day to day work that is our lives, our thoughts go to our pediatric brain and spinal cord tumor patients.  Their constant struggle to survive in the face of their illness makes us wonder what a vacation is like for them.  In some cases, the only real break they get is a day like Making Headway’s Family Fun Day where families get one day of fun, music, swimming, games and gifts in a beautiful garden setting.  For them, vacation lasts only a few hours, but it is one of the most important days of the year.

Check our our photos from Family Fun Day on our Facebook Page. CLICK HERE

Cost of Cancer Drugs

We’d like to hear your comments about this interesting article.  Should there be parity in the costs of oral vs. intravenous drugs for cancer treatments?

Dr. Hildreth is a medical oncologist in private practice and has his own blog.  Making Headway doesn’t know Dr. Hildreth.  We just found this article compelling.

Making Headway Foundation Scholarships Available

Making Headway Foundation has announced that it will be accepting Scholarship Applications for The Scott J. Reisser Memorial Scholarship Fund from pediatric brain or spinal cord tumor patients living in the NY, NJ, CT metropolitan areas.  Applicants must be able to show documentation that they have been accepted to a 4 or 2 year college or a vocational program.

Other criteria include, but are not limited to:   academic merit, letters of recommendation, financial need and the personal statement by the applicant.

Deadline for applications is May 1, 2013.

For more information, contact Catherine Lepone (Executive Director) at the Foundation.


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.

Do you deduct your non cash contributions correctly? is a link to a good article from Forbes.  If you donate to charity using non-cash means, you may want to read this.

Image is copyrighted by Toons4Biz