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Support Mayuri Saxena as she Evolves from ALS

Flushing, NY

Story

My name is Mayank, and I created this page for my big sister Mayuri who has ALS. This devastating disease has taken a tremendous toll on our small family of three, with Mayuri experiencing the most taxing end of the stick. A little more than two years ago, our world has become small and dark. I may have read, heard stories, or watched segments when the Ice Bucket Challenge was around in 2014 – but to watch your loved one suffering with ALS is a nightmare beyond anyone's imagination. Mayuri had a test confirming a genetic mutation of the SOD1 gene that is consistent with ALS. We are working tirelessly to ensure that she will be eligible for two promising trials, both which aim to intercept and destroy the genetic instructions that cause the SOD1 mutation (through different modalities). The first is the Tofersen trial by Biogen (currently recruiting participants for Phase 3 VALOR trial) under Dr. Timothy Miller. The second is the micro-RNA SOD1 gene-silencing virus trial (set to start in Fall 2019) at UMass, spearheaded by Dr. Robert Brown (whom we met in Dec. '18). Since January 2019, the weakness has now spread to her entire arms, hands, and now she is on a non-invasive ventilator. She is completely bed bound and depends on others to take care of her 24/7, spanning from feeding, to exercising, to even scratching her nose. To say she's going through a lot is an understatement. And yet - despite all of this, she still remains optimistic. Mayuri is a firm believer of "firsts" - firsts in new treatments, firsts in innovative therapies, and firsts in healings and cures... ALS is a disease that robs an entire family. It affects the person who we love, watching them lose function after function. And it robs those family members who are left helplessly watching, trying to stay ahead of the pain & discomfort by whatever means necessary. For a young woman to watch her prime years wither before her; for a mother to watch her first-born suffer and be in pain; for a brother who can't seem to protect & help his sister - this disease is all-consuming, in that, it relentlessly consumes all those around it... I’ve decided to channel my anger and frustration with her condition towards ACTION. As a brother, I may not be able to reach inside her DNA to prevent degeneration, but I will do everything in my power to make sure Mayuri remains fiercely independent.


Special Notes

Unfortunately, the associated costs and responsibilities are rising with time. It is my desire, and those of her family & friends, to afford Mayuri the opportunity to maintain a dignified and independent lifestyle as well as support her and her family. If you are able to volunteer your time, donate some money, it would help out our family immensely and we would be greatly appreciative.

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