Funding Research to Uncover Breakthroughs.
We are fighting to uncover the causes of one of the rarest and most devastating conditions affecting children: SPTLC2-related pediatric ALS — a rapidly progressive neurodegenerative disease that robs children of muscle control and, ultimately, their lives.
This work began with my son, King’Nazir, who was 7 when this disease took his life.
WHAT WE DO
Our Research Goals
AIM 1: Map the Broken Pathways
Using advanced proteomics, we will identify which proteins are disrupted in SPTLC2-ALS, revealing the "wiring failures" that cause the disease.
AIM 2: Identify Disease Fingerprints in Cell Lipids
We will study specific fats called sphingolipids, which are often altered in neurological disease, to discover a "disease fingerprint" that can help in early detection and treatment design.
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AIM 3: Model the Disease in Motor Neurons
We will turn patient-derived stem cells into motor neurons - the cells most affected in ALS - to watch how the mutation changes their biology and test ways to protect them.
Where We Are Now
• King’Nazir’s biological samples have been donated for research, and we are working with the NIH on the best long-term home and access pathway for them.
• We are working toward an openly shared research model of the E260K variant so scientists worldwide can study this disease.
• We are in conversations with researchers about RNA-based therapeutic approaches.
What Your Gift funds
• $25 — helps buy cell culture supplies
• $50 — helps fund molecular biology reagents
• $100 — helps cover quality control testing of our cell lines
• $250 — helps fund RNA sequencing
• $500 — helps fund antibodies and imaging of motor neurons
• $1,000 — funds quality control testing or RNA sequencing in full
• $2,000 — funds molecular biology reagents in full
• $5,000 — funds specialized cell culture materials in full
• $25,000 — creates patient-specific cell lines (our founding-partner gift)
A monthly gift of $25 supports ongoing lab work
If a budget item is fully funded, your gift goes to the next research priority.
Is Your Family Affected?
Research can only move as fast as families can join it.
If your child has SPTLC2-related ALS, or an unexplained early-onset motor neuron disease, we would like to hear from you. Every family who comes forward strengthens the science — and every family belongs in this research, including those who have too often been left out of it.
We will never share your family’s information without your permission.
