My name is Mayank, and I’m raising money 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. Mayuri has always been fiercely smart & independent – she got into a great high school, went away to a prestigious college, did a double-masters, studied abroad, volunteered in the slums of India, and she has always included loved ones at her annual bday BBQ! I was always the one to play it safe - went to a local college and stayed in New York while big sis explored this big world.
But in a little more than two years, 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 this inspirational video was made in January, 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. Unfortunately, the associated costs are rising with time.
HOW YOU CAN HELP
It is my desire, and those of her family & friends, to start a GoFundMe to afford Mayuri the opportunity to maintain a dignified and independent lifestyle. We aim to use funds collected to pay for items needed now. Some things are not even covered by insurance – and those that are - take months to be approved with bureaucratic red-tape. ALS is a condition in which time is of the essence.
Mayuri is disabled and if she works, she will lose her much needed government benefits. So there is no way for her to enjoy an independent lifestyle.
I am hoping this GoFundMe will change this. I have tried my best to give a ballpark figure of estimated costs;
· Customized manual tilt-in-space wheelchair ($6k-$8k)
· Modifications to her customized wheelchair (future technology additions) ($3k)
· Accessories to help Mayuri be more independent (varies)
· Augmentative Alternative Communication (AAC) technology like;
- speech generating device ($10k-$15k)
- eye tracking technology (camera, tracker, computer, tablet) ($10k-$15k)
· Acupuncture, Massages, and other therapies not covered by insurance (varies)
· Modifications to home to safely care for Mayuri like;
- adding dedicated electric lines for ventilator ($2k)
- installation of home automation devices accessible by AAC (varies)
· Supplemental supplies like carts, tables, storage for Mayuri’s equipment (varies)
· Maintenance of her wheelchair accessible SUV w/ramp (varies)
· Leisure trip expenses like;
- Rental of medical supplies i.e. hoyer lift, medical bed, etc (varies)
- Traveling home health aide/LPN ($350/day minimum)
- Accessible transport & lodging for Mayuri (varies)
· Medical trip expenses like;
- Rental of accessible ambulance for out-of-state clinical trials (varies)
There may be expenses I cannot predict at the moment. I have tried my best to think of scenarios requiring help from you all– her kind supporters.
IMPORTANT - if you know of any way to help Mayuri access the Tofersen (Biogen) or mi-RNA (UMass) trials via Expanded Access or Right To Try , please reach out to us A.S.A.P. - as this will be a causative solution (instead of symptomatic management). This means any "in" with Biogen or with the Institutional Review Board (IRB) at Johns Hopkins University in Baltimore. There is hope - and we fully intend to lean into this perspective of modern medicine, love, prayer and purity of desire.
All funds donated will go towards THE MAYURI SAXENA TRUST for the benefit of Mayuri Saxena. In the event the trust should close, remaining funds will go to benefit the nonprofit Youth Boxing for Change, and her beloved puppy Theo.
Mayuri has her own website http://mayurisaxena.com/ where she is hoping to turn her journey into inspiration & upliftment for others.
ALTERNATE WAYS TO DONATE
Many people have reached out wanting to make sure 100% of their contributions are used for Mayuri (and ensure that no commission is taken out).
I have gone ahead and set up accounts with PayPal and Zelle.
PayPal - select SEND money, then input the e-mail [email redacted] , enter the amount you wish to contribute, then under that (in the blue bar) make sure it says "Sending to a Friend" (you can click on CHANGE if it doesn't currently say that), then add your Full Name in the Notes section (so we know who it's from). Press continue and be sure to pay using your checking account - and voila - you're done! (please note PayPal will charge a fee if you use "Paying for an Item or Service" and/or use a debit or credit card for payment).
Zelle - look for Zelle in your banking mobile app to send money (it works with most banks ), or else download the Zelle Pay app, and send your contribution to
*Please be sure to include your Full Name in the Notes section when sending payment, for accounting / record keeping purposes for us. Also, you can avoid any transaction fees if you use your checking account.
A HEARTFELT & WARM THANKS
Thanks to dear friends;
- Alberto Ortiz for the video
- Chand Nirankari for help with Mayuri's website
- the numerous friends & family who are making this journey with us
Thanks also to the amazing legal team working pro-bono for Mayuri;
- David Kronenberg, Esq. of the Goldfarb Abrandt Salzman & Kutzin law firm for help in creating Mayuri's trust
- Peter Travitsky, Esq. of the Evelyn Frank Legal Resources Program at the New York Legal Assistance Group for the tireless advocacy in securing quality health care for Mayuri
- Jamie Thompson, Esq. for orchestrating the entire legal team
- Megan Darr
- Hasna Ravi
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