The Valerie Fund Board of Directors is proud to announce a new Center will join The Valerie Fund healthcare network serving children in our area with cancer and blood disorders. The St. Joseph's Children's Hospital Paterson-based outpatient facility strengthens The Valerie Fund's ability to offer top-notch services and programs for children and their families in other parts of New Jersey. The official date for the inclusion is July 1, 2016.
The Valerie Fund Blog
The Valerie Fund would like to share a letter that we received from Ed and Sue Goldstein, founders of The Valerie Fund in support of our Friend to Friend Campaign: Give, Share, Repeat. We are asking all of our supporters to share your knowledge and connection to The Valerie Fund with your friends, family and business associates just as Ed and Sue Goldstein have below. Join us by making a donation of your choice in support of The Valerie Fund Walk and JAG Physical Therapy 5K Run on June 11th. Then, post a letter on your social media about your relationship to The Valerie Fund and asking your friends to do the same and share with their social media. Our goal is to recruit one million supporters for this year's walk! Thank you and we hope you will consider this campaign!
The popular use of various colored ribbons to promote disease awareness provides the perfect synergy to The Valerie Fund’s kickoff of fundraising activities leading up to the 2016 Walk and JAG Physical Therapy 5K Run to be held in Essex County’s Verona Park on Saturday, June 11, 2016. Red ribbons for Sickle Cell Awareness and gold ribbons for Childhood Cancer are powerful symbols of the Red & Gold Campaign. These meaningful colors of awareness will be the theme for the 2016 Valerie Fund Walk.
Sue and Ed Goldstein created The Valerie Fund in 1976 after losing their younger daughter Valerie to cancer. In Valerie’s memory, they were driven to make things better for other children and families fighting that same battle. In 1989 Sue and Ed’s older daughter Stacy was diagnosed with breast cancer and in 2001, at the age of 37, Stacy, too, lost her battle with cancer.
Sue was always in the forefront of getting the word out about The Valerie Fund and parenting a sick child. She co-wrote and co-produced the early Valerie Fund newsletters, and has just recently started writing for her personal blog.
What follows is an enlightening excerpt from Sue’s as-yet-unpublished memoirs titled “Unexpected Lives”. She describes the book as “...told from a mother’s perspective... the story of how one family confronts cancer in its only two children: Valerie, diagnosed when she was three, and years later, Stacy, diagnosed at twenty five." Sue uncovers her family’s will to live fully and enthusiastically. Hovering over all, however, is a dark cloud of uncertainty as ordinary people are faced with extraordinary illness.
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.
“Mommy, I want to do normal things, like other kids…”
When your child has cancer, there are no easy answers to this familiar and heart-wrenching refrain. The Valerie Fund has always known this, and in 1983, the organization took a giant step to give children with cancer at least one experience other kids have – going away to summer camp.
Physicians are trained to utilize modern scientific means to combat cancer at its source, but they are the first to admit these treatments that “cure” can take a huge toll on the patient. The side effects of chemotherapy and radiation are well known: pain, discomfort, nausea and other issues that require their own set of treatments. That the physical well-being of the patients with life-threatening illnesses is inextricably linked to their emotional state has become widely accepted. Merging integrative health services with medical care and psychosocial support can improve the quality of treatment for these patients.
Children diagnosed with a long-term or chronic illness, such as cancer or a blood disorder, may have difficulty managing a typical school schedule for weeks or even months. Navigating the school system adds yet another burden to parents already juggling the emotional impact of their child’s illness and the impact it has on their ability to maintain a work schedule while also tending to the needs of their healthy children. Children are removed from the basic framework of their childhood: the world of school, which structures each day and is the main source of their social environment. Virtually every child will require some type of special arrangements with the school and sometimes the school system.