I run a foundation tasked with the following. This is in addition to raising the funds so the Foundation can perform the following functions:
There are children all across the country with a deadly form of childhood cancer, neuroblastoma (NB), the most common cancer among infants and young children. These children are fighting for their lives. Fewer than half will survive. These children are our focus.
We know with absolute precision who the leaders are in the fight against this awful disease. These doctors are keeping children alive after other centers have turned them away, telling their parents to go home and call hospice. They are doing so using unconventional means, years before clinical trials are opened. We know this firsthand, as we have been searching for and following these doctors for 18 years.
A child anywhere in the country who is diagnosed with this deadly form of cancer will, in all likelihood, be treated with protocols developed by doctors on our Medical Advisory Board.
Our placement of funds has already been effective. FDA and NCI multi-million- dollar funding has followed our support of early phases cancer research of some of the most promising non-toxic treatments using immunotherapy.
Children are dying needlessly who could be saved with current treatments because their parents and attending physicians aren’t aware of them. We have produced a free cancer guide, Steps to Hope, teaching parents and caregivers how to find the leading centers focused on their child’s cancer, to confirm their child’s diagnosis, and get the most effective treatment recommendations. The book is free and can be downloaded at www.endkidscancer.org.
In addition, our foundation provides critical connections for desperate parents. We get calls and emails from parents across the country, even the world, asking, “Our child has relapsed – what should we do?” Within hours we have those parents talking to leading investigators on our board about the best treatment options. for a sick child. Funds also help offset the loss of income due to one.
We also provide funds to low-to-moderate income families on the California Central Coast to help with household bills and other expenses associated with caring for a sick child with neuroblastoma.
I founded the organization in response to witnessing the devastating pain and loss endured by so many children and their families by cancer, while caring for my own daughter during her 19-year cancer battle. During this time, I learned the researchers on the cutting edge at the leading cancer centers are on their own when it comes to raising funds for their research.
Unlike the vast majority of cancer research foundations, instead of waiting for projects to come to us for funding and then picking which to support out of this limited pool, we aggressively seek out the most promising treatments ourselves by networking with cancer investigators, reading the medical literature, attending medical conferences throughout the United States, and of course, relying on our medical advisory board as a source for the most promising research to support. This strategy has proven to be very effective.
The high points have been funding projects at the earliest stages, when no one else will invest because of the risk; then later on have the National Cancer Institute and the Food and Drug in Administration come in once proof of concept has been established, with multi-million dollar investment to support this early research.
Sharing information with families fighting cancer has proven to be helpful via our cancer guide book Steps to Hope. Also, getting on the phone with parents all across the world, providing critical guidance and making connections for families with the leading cancer researchers in the world, during their most desperate times.
Low point. In the pediatric cancer world, there is a euphemism commonly used by parents on social media, referring to a child who just passed away – “my child earned her Angel Wings today”. Each time I read it, I have to almost pick myself up off the floor.
No matter how prominent an individual or institution, their information and advice in many cases is incorrect. Anytime you are making an important decision on the information and advice you have received, confirm it by multiple sources.
The premise of SCORE - having individuals with massive amounts of experience offering to help--is a foolish thing to not take advantage of.
The individuals I worked with have provided priceless advice and also critical help in one area I feel extremely important, written communication and advertising.
My mentors have been kind and generous with their time. The type of advice I received would have cost our foundation thousands of dollars.
Their willingness to share skills, knowledge, and expertise - at a level not condescending or confusing - in a concise manner, easy to understand.
They demonstrate a positive attitude even when I am having less than positive experiences with aspects of my business. They take a personal interest in our mentoring relationship.
What advice would you give to someone thinking of starting a small business?: First thing, make a contact with SCORE. I have already recommended SCORE to several folks wanting to start a business.
They have individuals with experience in all areas of business. They are kind and giving people who can significantly improve the results of your efforts.