Just in time for the March 26th international epilepsy awareness raising Purple Day 2024, there was a flurry of stories in late March about successful fundraising efforts for epilepsy assistance and research. MacKenzie Scott’s Yield Giving’s request for proposals awarded $2 million to the Epilepsy Foundation of Texas. Based in Houston, this organization helps Texans with epilepsy overcome its challenges and furthers efforts to advance new therapies that stop seizures and find cures.
A grant writer for over 25 years, I am in awe of Epilepsy Foundation of Texas. The Yield Giving’s proposal guidelines were very broad: They funded organizations that promoted voices and opportunities for people of modest means, and groups who have faced discrimination and other systemic obstacles. They received over 6,300 applicants and gave out 361 awards. Kudos to the Epilepsy Foundation of Texas’s grant writer for cracking that code!
Three days later, the Times of India ran a story about the Pune Baner Rotary Club’s Purple Day third annual Purplethon event. Held on March 26th, the Pune Baner Rotary Club organizes a walk to raise money to cover the costs of brain surgeries for people with uncontrollable seizures. Surgeries cost 600,000 rupees, the equivalent of about $7,100USD. The Rotary Club raised enough money during the 2023 fundraiser to cover the costs of 15 surgeries, performed by neurosurgeon Dr. Kurwale Nilesh Shaligram at Deenanth Mangeshkar Hospital in Pune. Apparently, all the patients who had the surgery since July had good outcomes.
As a grant writer who underwent a temporal lobectomy to treat my uncontrollable seizures in 2014, I am in even more awe of the Pune Rotary Club members than of the Epilepsy Foundation of Texas. Like the 15 recipients of the Pune Rotary Club’s efforts, I ultimately had a good outcome from my brain surgery. The medical journey was a bumpy road (outlined in my book, Seizing Control), but given the life-changing outcome of full seizure control, I’m grateful I had the opportunity to take it.
While it’s great to see different sources of money allocated to different aspects of epilepsy treatment and care, when you compare the Yield Giving grant to the Pune Rotary Club’s fundraiser, there’s something a bit uneven going on around here. Yet, when one compares Pune, India, to the epilepsy treatment resources currently available in Uganda, Pune is in great shape.
Almost two years ago, I blogged about the inadequate care available to people with epilepsy in Uganda due stigmatization and lack of access to anti-seizure meds (ASM’s) and neurologists. Last week, the news from Uganda indicates there’s been little progress. A recent study found that there are 775,000 Ugandans living with epilepsy. Sadly, because epilepsy is not a contagious disease, treating it is not a priority, so people with epilepsy simply don’t have access to ASM’s. Last week, the Uganda Monitor ran a story about Gloria Anguyo, a 36-year-old woman with epilepsy who sells beans for a living and can’t afford medication. Desperate to stop the seizures, she sought help from alternate sources. “I visited witchdoctors three times where they gave me onions and shoes to sniff for three months. It did not change anything,” Ms. Anguyo said.
The same day Epilepsy Foundation of Texas received their big grant, Epilepsy Foundation of America (the national umbrella group for all state EFA chapters) announced the launch of their NeuroImpact Fund. Established in collaboration with Iaso Ventures, the fund’s goal is to advance the development of “pioneering therapeutics, diagnostics, and technologies aimed at revolutionizing the landscape of care for epilepsy and seizure disorders.” The partnership is an opportunity to bring new investors into the field of epilepsy treatment, hopefully leading to advanced technology that successfully treats the condition. According to Iaso Ventures’ managing partner Wasim Malik, “this collaboration represents an unprecedented opportunity to engage a wider spectrum of investors in driving tangible outcomes for people living with epilepsy. The Iaso NeuroImpact Fund will not only benefit those affected by debilitating neurological disorders but also offer investors a unique opportunity to make a meaningful difference while reaping market-leading financial returns.”
As somebody who underwent two invasive brain surgeries to get my seizures under control, I am always thrilled to learn about the latest epilepsy-treatment innovations. These include updated imaging technology, innovative seizure-detection wearable devices, and new genetic testing that increases the likelihood of a successful medication regimen. After reading about these advancements, I do a Snoopy dance, write a blog, and celebrate that those still managing uncontrollable seizures might have an easier journey than I did. But when I read stories like Gloria Anguyo’s, juxtaposed next to Mr. Malik’s declaration about NeuroImpact Fund’s ability to make a difference while turning a profit, I hope some of the gains and advancements eventually make their way to places like Uganda, too. Based on Uganda’s poor infrastructure, insufficient ASM supply, and scarcity of trained medical personnel, this will likely take long time.
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