Combatting DIPG

-- By DanielAdewunmi - 16 Feb 2023

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.

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.

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.

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.

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.

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.

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.

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.

This draft helpfully explains more about your project and intentions. Some questions naturally arise in a lawyer's mind, particularly if he has been running and advising 501c3 organizations for decades: What lawyer incorporated your non-profit and submitted the 1023 to the IRS for 501c3 determination? Are they still involved? How do the by-laws arrange for the board to govern this charity and who are the board members? If you continue to raise, on average, less than $50k/year over your first five years, IRS will expect nothing more from you than an annual tax return. (You did file one, right?) But if you grow further you require more infrastructure. Who prepares your books?

In short, the draft expresses the desire to master the running of a small family charity, but—despite our being in law school together—is light on the legal details and issues. Maybe it would be a source of useful learning to turn the draft in that direction?

Hi Daniel! First off, I'm so sorry for your loss. My family and I have also lost a great deal to cancer, and while no two family passings are the same, I know it's hard. I'm sorry you, your sister, and the rest of your family found yourselves faced with such a challenge. That said, it's wonderful that you were able to channel it into something capable of helping many others. I always find stories such as this one uplifting, thank you for sharing. It seems like you've achieved a great deal of success running the organization so far, but I can imagine balancing that with school's quite taxing. Crossing my fingers that the Symposium offers helpful information and guidance.

- Michael

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