The Valerie Fund Blog

When Valerie’s family and friends sought to honor her memory 40 years ago, most were new to the world of philanthropy and unlikely fully aware of the challenges of raising money.

Since the first Valerie Fund Children’s Center opened at Summit’s Overlook Medical Center in 1976, the extraordinary growth of The Valerie Fund has been rooted in founders Sue and Ed Goldstein’s own heartbreaking experiences and their desire to provide compassionate care close to home. This year we will celebrate the generosity, willingness to give back and tireless efforts of so many.

While there is so much more to do, we can reflect on the 40th Anniversary of the founding of The Valerie Fund and be proud of the fact that thousands of critically ill children and their families were not alone as they navigated the many challenges faced following a devastating diagnosis of cancer or a blood disorder.

We can appreciate the integration of top-notch medical care with a growing range of customized therapeutic services offered by social workers, child life specialists, educational liaisons, psychologists and specialists in integrative medicine and palliative care. We can acknowledge that while rarely covered by health insurance, these social services play a vital role in addressing quality of life issues during the treatment and healing process.

Amy Tarabokia’s son, Nicholas, was diagnosed with leukemia in 2006 just shy of his fourth birthday, and received his last treatment in 2009 on his seventh birthday. She notes that there are many support groups for families but very few, if any, just for moms. "Moms take care of everyone else and tend to put themselves 'on the back burner'.” One of the things she remembers most vividly is the overwhelming feeling of isolation, particularly when Nicholas was quarantined and her “only outlet was the phone.” She tried to stay positive but there was a “constant dark cloud” hovering over her. The Valerie Fund Mom2Mom program gives moms a way to connect with kindred spirits who understand what it means to have a sick child because they have been there themselves. 

Unless your child is attending a tuition free college (and there are a few of those schools out there), the average cost of getting a four - year degree is now conservatively priced at $180,000 (private) and $95,000 (in state public). While these figures include virtually all of the costs associated with higher learning---tuition, housing, meals, books and school supplies, fees and transportation--- not many people can avoid the sense of sticker shock and foreboding when thoughts turn to paying for this privilege.

As education costs continue to rise, The Valerie Fund Scholarship Committee has seen a steady increase in applications from both pediatric cancer patients and those living with blood disorders. “These are outstanding kids,” says committee member Debbie Schiller, “they’re hardworking and highly motivated to get the best education they can. Their applications reflect a universal anxiety about how to make up the difference between tuition costs and what their families can afford to pay.”

As medical science allows us to become more proficient at saving the lives of pediatric cancer patients, their need for survivorship support in adolescence and adulthood has grown. Approximately two out of three children experience at least one long term side effect (late effect) of treatment. These side effects may affect any organ depending on the primary cancer diagnosis and the treatment the child received. These may include damage to the heart, lungs, kidneys, sexual organs, as well as cause psychosocial, emotional effects and learning difficulties. In addition, there may be difficulty in obtaining health and life insurance as well as possible discrimination in adulthood obtaining a job.