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| | | What is DIPG
Diffuse Intrinsic Pontine Glioma, DIPG, is a tumor of the brainstem. It affects the most vital functions of human living including breathing, blood pressure and heart rate. It is almost entirely a pediatric illness affecting about 300 children per year in the United States. As of now, DIPG prognoses are incredibly poor, as the current five-year survival rate for a child diagnosed with DIPG is only two percent. | |
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< | My Personal Experience
My experience with DIPG began in May 2021. I had recently been admitted into Columbia Law School and was preparing to graduate from the University of Florida. A few weeks prior to graduation, my younger sister Abigail began to complain about severe headaches and double vision. There were a few urgent care and emergency room visits but no cause was identified. However, at the point my sister attended my graduation ceremony with the rest of my family, it became clear that there was a significant problem. Her double vision and headaches had been paired with facial drooping and loss of balance.
Following my graduation, on May 4, 2021 my sister had an MRI performed. Only a few hours later, I received a phone call from my mother asking me to make the two-hour drive home as a tumor had been found on the MRI. 24 hours later, my family was informed that my sister was now a DIPG patient, a diagnosis that would likely lead to the loss of her life.
Treatment
As the doctors informed us about my sister's new diagnosis, they let us know the current standard of care regarding DIPG. There was no encouraging news as they stated that there are no cures for DIPG and treatment is largely focused on improved quality of life. Due to the tumor's unique location on the brainstem, surgical operation is impossible because the brainstem is so crucial to human function. Additionally, chemotherapy and radiation have only been found to decrease the severity of symptoms for up to a few months before the tumor resumes its aggressive progression. As a result, they recommended that we return to the University of Florida and participate in a clinical trial, in hopes that developing treatment could produce beneficial results. It was at this point that I decided to defer my admission to Columbia Law School. It was clear to me that this illness posed a grave threat to my sister's life and that my family needed me to support them as she underwent treatment.
Clinical Trial
At the University of Florida, we were introduced to a clinical trial utilizing immunotherapy. The aim of the trial was to essentially train my sister's immune system to combat and destroy the tumor on its own through the development and administration of "vaccines" created from a biopsy of her tumor and collection of her T-cells. Prior to the administration of these shots, the trial had my sister undergo chemotherapy and radiation treatment in an effort to prevent the tumor's advancement long enough for the adequate development of the vaccines.
My sister's symptoms would improve throughout the course of the summer but the tumor ultimately progressed beginning in late Fall 2021. The positive effects of radiation and chemotherapy were wearing off as their lack of permanence became apparent. Additionally, the vaccine administrations under study in the clinical trail were not having the desired effect of inspiring her immune system to destroy the tumor to an adequate degree. Unfortunately, the tumor's development would continue until my sister's passing on January 12, 2022. | >
> | I shared a bit about my personal experience with DIPG in the prior draft of this essay. I now want to highlight the development of Abby's Corner and what is to come. | | | Abby's Corner
Following my sister's passing, my family and I co-founded Abby's Corner. Abby's Corner is a 501(c)(3) organization with the aim of combatting DIPG through the raising of funds and contribution to medical research. In November 2022, we joined the DIPG/DMG Collaborative, a membership of DIPG organizations pooling resources to give greater contributions to medical research and clinical trials. | |
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< | Obstacles
An unexpected obstacle that we have encountered since founding Abby's Corner concerns the intersection of medicine, law, and policy. DIPG is a pediatric illness, whose patients tend to be on the younger end. Current regulations require testing of new treatments to take place on adult populations before they can be expanded to pediatrics. This is in place to ensure the protection of our children from potentially harmful or untested treatments. However, as DIPG does not have a substantial adult population on which clinical trials can take place, potential treatments are being withheld from DIPG patients as they cannot be tested on the required adult population. As a result, treatments that have proven effective for unrelated cancers are being translated into the DIPG space for testing rather than allowing for the development of treatments curated specifically for DIPG. | >
> | In developing Abby's Corner with the ultimate goal of positively contributing the world or pediatric brain tumor research, there are various elements that require my exploration and a significant amount of learning. The first element concerns the construction and maintenance of a 501(c)(3) organization. | | | | |
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< | Furthermore, the rarity of DIPG poses a significant obstacle to further development of treatment. Because current regulations require a showing of efficacy at a large scale prior to its approval generally, the patient population is simply too small to produce the mandated results. Especially when this issue is viewed in combination with the adult versus pediatric issue exacerbated by current policy. | >
> | I have been operating as the administrative director for Abby's Corner since its inception in June 2022. However, because this is a family-run organization, the title of administrative director does not encompass the full breadth of my responsibilities. I am essentially responsible for every major Abby's Corner initiative while also being responsible for maintaining the day-to-day operations of the organization. This means that I facilitated our membership into the DIPG Collaborative, I am currently running our major annual fundraiser – the Abby's Corner Walk-A-Thon, I partnered with Abigail's former high school to award the first two recipients the Abigail O. Adewunmi Memorial Scholarship, I maintain the social media, I spearheaded the design and ordering of Abby's Corner T-shirts and much more. I understand that at this stage of Abby's Corner, I am functionally the heartbeat of the organization, running all aspects of the 501(c)(3) that has raised over $40,000 in less than a year. | | | | |
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< | As a result, there is currently a Congressional proposal that has been tabled entitled the Promising Pathway Act. This act is intended to combat the very issues expounded upon in this narrative to increase the feasibility of clinical testing. However, political maneuvers have resulted in the act being tabled off, potentially dead in the water. This intersection of current legal standards, policy, and medical research have created an obstacle in combatting an illness that has touched myself and my family directly. It is an obstacle that I hope to see overcome, one that I eagerly seek guidance regarding manners in which to approach the issue, as I find myself in an environment in which instructors and mentors may have valuable insights. | >
> | However, my next mission is to solidify the organization in a way that is sustainable. I want the organization to function in a manner that reduces its dependence on me as a single individual, but allows it to continue to function in instances where my availability is reduced. To do this, I plan to commune with other DIPG Collaborative membership organizations at the upcoming DIPG Symposium in Lexington, KY. I hope to study the composition of their organizations and learn strategies for building a volunteer-run 501(c)(3). If that proves infeasible, I hope to learn from these longstanding organizations, how to build out a medical research organization that can pay its employees while prioritizing its mission of funding pediatric oncology research. | | | | |
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I'm so sorry, Daniel. I lost my father to gliobastoma, and so we have shared some of life's most disturbing experiences. | >
> | The continued development of Abby's Corner also requires a much more extensive knowledge of the medical research community, including how to identify studies and trials worthy of financial support. Again, I look to the Collaborative as my starting point for this learning. The DIPG Collaborative utilizes the Medical Advisory Committee of The Cure Starts Now as a means of identifying and monitoring research projects worthy of investment. In convening with the Collaborative at the upcoming symposium, while also getting connected with researchers at the forefront of this work, I hope to gain an understanding of the current proceedings and plans for DIPG research, such that I can decide whether to continue reliance on the Collaborative's Medical Advisory Committee or look for alternative means of counsel regarding prospective research projects. | | | | |
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< | As you may have seen among the research docs, the loss of a sibling is a surprisingly frequent motivator in setting people on the lifetime path of research against the disease that caused the death. This draft suggests that you might be inclined by your own tragic experience to develop your practice along lines that intersect in the funding and regulatory approval of pediatric oncology R&D. In that case, the route to improvement is to bring the draft from the past into the future, from showing how you came by the mission to describing how you plan to educate yourself to perform it. | >
> | My Legal Career
The development of Abby's Corner intersects with my upcoming legal career. My legal interests are in the criminal justice system, specifically in the representation of the currently incarcerated in their criminal appeals as well as concerning their rights and living quarters while incarcerated. However, as a result of my personal experience, I have an interest in the funding and regulatory approval of pediatric oncology research and development that I imagine will be a part of my professional career in some capacity. | | | | |
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< | The first step is to outline what you need to learn, the catalog of questions that represent what you don't know about your future practice. The next is to define the network you need to build, that is, the people you need to meet. Along the way, compiling those questions involves discovering sources, reading about both what and who. That means building your own learning infrastructure, from bibliography to Rolodex. Your next draft should be about how you intend to do that.
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> | I recently spoke with a D.C. Judge and shared my Abby's Corner story with them while also sharing my interest in clerking immediately after law school. They advised me to pursue clerking specifically in D.C. because of the lobbying opportunities that can arise from being based their geographically. This has given me some ideas for ways that I can positively impact Abby's Corner and pediatric oncology as an attorney professionally. My hope is not that I will be working directly in the legislature affecting this work, but that as an attorney, I can form relationships with the individuals who can affect change in this area. This may or may not encompass a formal lobbying process, but I plan to find every opportunity to relay my story and concerns in the world of pediatric oncology research to those that are open to listening and in the position to help. | | |
You are entitled to restrict access to your paper if you want to. But we all derive immense benefit from reading one another's work, and I hope you won't feel the need unless the subject matter is personal and its disclosure would be harmful or undesirable. |
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