today we are honored to share our recent discussion with Donna Ludwinski, the Co-Director of Research Programs at Solving Kids' Cancer. Donna has immersed herself into childhood cancer research, helped create the Neuroblastoma Handbook for parents, and created NB Globe who, when describing itself, says "We believe in research". So do we...
We are pleased to be be sharing her hard-won knowledge in a two-part interview. Part One describes her background, entry to the childhood cancer world, and her work with Solving Kids Cancer. Part Two will feature more detailed discussion about clinical trials.
We hope you find this and the follow up discussion interesting and informative.
Dear Donna, thank you very much for taking the time to chat with PAC2. Within the community, you are known as a Wikipedia of research, specifically neuroblastoma. We are excited to have the opportunity to hear your thoughts. But first, please tell us about your son Erik.
Thank you for this kind invitation to share with you today. I chuckled at your Wikipedia reference – would you have guessed that over time I added over 200 edits to the Wikipedia neuroblastoma article? Very early on in my son Erik’s relapse treatment, he was in the hospital waiting room and reading an article that had a list of questions to determine if a person was pathologically addicted to gambling. So, being a smart alec, he re-worded the questions and quizzed me aloud in the waiting room: “Have you ever borrowed money to support your habit of researching?” “Have to ever lied about your habit of researching?” etc. It was hilarious. So for years my poor family has put up with my obsession to learn all I could about neuroblastoma.
For a little background, my husband Paul and I are both engineers, and Paul was an Air Force officer stationed in Boston where we lived with our two sons Erik and Karl when we learned Erik had cancer. (Later we had two more children, Lesa and Aron.) Erik was diagnosed with high-risk neuroblastoma when he was 6 years old in 1991. He did not respond well to induction, requiring 9 cycles of chemotherapy to clear his bone marrow, and he had surgery, radiation, and a bone marrow transplant at Boston Children’s. He had no ill effects from treatment except hearing loss. He grew to 6’2” and 170 lbs, and excelled in academics and sports. He played on the high school football team and loved to snowboard. He went to college on a scholarship for computer engineering. During finals week of his sophomore year we learned why he had been so tired and achy that spring. He had relapsed with neuroblastoma after 13 years of remission at age 20, May 2005.
He went through almost 5 years of treatments and was treated at 4 different institutions on and off clinical trials. Like so many of our young cancer warriors, he taught us how to live life full of love, faith, compassion, and humor. The last 2 years he went back to college full time, but the cancer progressed rapidly in the end and Erik died in February 2010 in his last semester. Erik was awarded his degree posthumously with two majors -- Computer Science and Computer Information Systems, summa cum laude.
Our hearts go out to you and your family, we are so sorry for your loss. But like so many other parents, you have taken up the fight. With so many areas to join that fight, what made you focus on research?
That is a great question. During Erik’s relapse battle, I had a lot of catching up to do. In the early 1990s when he was first diagnosed, there was no internet, and medical information was very difficult to access compared to today. I scanned oncology texts in the aisles of the Harvard Medical School book store – they were too expensive to buy! I had a friend that was a pathologist who did literature searches for me, but it was tedious work finding and printing journal articles. Fast forward to Erik’s relapse 2005, I had much to learn. I suppose although my degree is in chemical engineering and not medicine, I was not intimidated to learn new terms and concepts. I was a stay-home mom and I spent all of my waking hours (and many I should have spent sleeping!) reading and specifically looking for reliable, authoritative, and evidence-based sources of information. As we all know there is so much information available now, discretion is needed in determining what is trust-worthy. There is a vast array of good sources available, so I spent countless thousands of hours learning about neuroblastoma, the history of the treatment, how current treatments evolved, other cancers, clinical trials, current research to understand new approaches, and talking to other parents. During this time I worked with a group of amazing parents and some medical professionals over the course of a couple years to help write and edit the 220-page Neuroblastoma Handbook for Children’s Neuroblastoma Cancer Foundation (CNCF), an ongoing project that is a resource for parents that is exhaustively referenced to medical literature.
All of this was driven by the hope of finding ideas for treatment for Erik. Since he was an adult, and too old for most neuroblastoma clinical trials, I also spent a lot of time looking at adult clinical trials for non-specific solid tumors as options dwindled trying to figure out if any new small molecules or new immunotherapy approaches addressing different mechanisms looked promising. All the while, Erik’s doctor was extremely supportive of my efforts and we all trusted his judgment. All ideas were discussed with him and he was very conscientious to consider reasonable approaches. Right after Erik died, his doctor came to see us. He told me “You can’t let this go to waste.” I realized right then that all this work was either a waste of time or had some value. So I continued to share resources with other parents, and spent more time learning about the broader landscape of pediatric cancer research, tracking the money in government and non-profit funding, academic and industry research activities, new drug development, immunological approaches, and clinical research issues in pediatrics.
Please tell us more about NB Globe – Neuroblastoma News.
A couple months after Erik died, I had the opportunity to go to my first oncology meeting as a patient advocate. ASCO (American Society of Clinical Oncology) annual meeting in Chicago is the largest oncology meeting in the world, with 30,000 attendees (about 800 are pediatric oncologists). I was surprised to learn that of the 350 patient advocates in attendance, there was only one other advocate interested in pediatric cancers. The same month I went to Stockholm for the ANR (Advances in Neuroblastoma Research) meeting that takes place every two years. In two years I attended 12 major oncology meetings with travel supported by family, foundations, and patient advocate scholarships. At the ANR meeting I met another NB parent, John Rogers who is a physicist at University of Kent in the UK, and we brainstormed the idea of the NB Globe website to disseminate NB research news from meetings and publications for parents. Admittedly, I have been slacking off writing lately; it is tough to keep up the writing with the constant intake of information. After joining the staff of Solving Kids’ Cancer, I was involved with the planning and launch last year of Dr Tim Cripe’s podcast called “This Week in Pediatric Oncology” published on NB Globe for Solving Kids’ Cancer. So far we have 26 published episodes and 5000 downloads and the NB Globe site has had 1M hits to date with 60K unique visitors. In addition to attending oncology meetings, I was trained as an FDA Patient Representative and participated in an Advisory Committee meeting discussing a drug used in pediatric cancer, and serve on the NANT (New Approaches to Neuroblastoma Therapy) Parent Advisory Council.
Please explain the mission of Solving Kids’ Cancer, and how you got involved?
During Erik’s relapse battle, I joined the n-blastoma listserv on ACOR and became friends with John London (Penelope’s Dad) and Scott Kennedy (Hazen’s Dad), co-founders of Solving Kids’ Cancer, who both lost their children to neuroblastoma. As a result of this experience, they studied examples of venture philanthropy in other disease areas and conceived of a new model to effectively find, fund, and manage clinical research aimed at improving survival of the deadliest forms of pediatric cancer. Another unique feature of SKC is that the Board of Directors supports all administrative costs, including donated office space, salaries, and operational costs, so that 100% of the money donated to SKC goes directly to research programs. I was very impressed with their approach, and Scott invited me to join in on a few volunteer projects for SKC, and I went on staff in Dec 2010.
Several questions drive the priorities of SKC:
Searching out answers to all of these questions, and more, SKC is equipped to identify promising research approaches. If the cutting-edge research is already underway, quick funding may be supplied. If a promising approach requires “research advocacy” then SKC studies the background landscape, matches scientists and clinicians to complete the required steps from preclinical, translational, and clinical work, and provides input of study design. These philanthropy-initiated projects move promising therapies forward much quicker than waiting for academia and/or industry to conceive certain ideas for pediatric cancers. SKC also invites proposals that meet specific criteria for ideas for promising new therapies.
In contrast to many other funding mechanisms, when a project is approved by the SKC scientific advisers and the parent research advocates, SKC does not award a lump sum and there are no reporting requirements. Instead, a research grant agreement is developed, complete with a detailed budget that is carefully examined for indirects and non-essentials, milestones and payments tied to accomplishment of each milestones, and frequent reporting of progress and results. SKC manages the project from start to finish, which includes input on eligibility requirement, accrual issues, amendments, adverse events reporting, adding sites, and other issues. All management activity is funded by the SKC Board of Directors, so that all research dollars from donors or co-funding charities are applied directly to the research project,
What’s your response to the question: “What is the purchasing power of $100 in childhood cancer research”?
This is a very complicated question. Basic science, preclinical research, and clinical research are all so different that to describe the tangible purchase power of each can ultimately be quite discouraging. For example one hour or two hours of a basic science or preclinical research project may cost $100, and in clinical research it may pay for ½ hour of consultation with a patient, or a fraction of the cost of a required tests or correlative study. It seems like the purchasing power is extremely small, but these elements are essential to furthering progress.
Thank you so much Donna.
PAC2, that’s only part one of our discussion. The second part, to be published in a couple weeks, Donna will address these questions and others….
Thank you so much for all the blood, tears & hard work that you and your team are putting in to advance paediatric cancer research...as an oncology mom myself, I applaud you!! Keep up the good work!!
It is because of Donna that our foundation, The Catherine Elizabeth Blair Memorial Foundation, has chosen to partner with Solving Kids' Cancer to fund critical neuroblastoma research. Thank you Donna for your expertise and also for your empathy and compassion for families - you not only "get" how we feel, you "get" what needs to be done.
Thank you. great interview.