Help Mayuri get Care Services
Donation protected
Hi my name is Mayank, and I'm the brother of Mayuri. I've created this GoFundMe to help raise money for urgently needed staff for my sister - who doesn't have adequate staffing to help provide her with the skilled care she desperately needs.
Who is Mayuri?
She's a hero to many who have ALS (also known as Lou Gehrig's / Motor Neuron Disease), a rapidly fatal neurodegenerative disease.
Even though Mayuri is 100% paralyzed, on a ventilator, and a feeding tube, she's been an effective advocate for the entire ALS community.
Check out some of the work Mayuri has done for the ALS community:
- Mayuri and I were interviewed live about the Act for ALS bill on a nationally syndicated news show.
- Mayuri and her message was mentioned in front of the United States Congress.
- President Joe Biden mentioned Mayuri by name as he was signing the Act for ALS bill into law (at the 20:40 minute mark)
Despite the achievements above for the ALS community, she (and our family) encounter the problems that many pALS face (people with ALS).
Insurance has exhausted its resources
Who is Mayuri?
She's a hero to many who have ALS (also known as Lou Gehrig's / Motor Neuron Disease), a rapidly fatal neurodegenerative disease.
Even though Mayuri is 100% paralyzed, on a ventilator, and a feeding tube, she's been an effective advocate for the entire ALS community.
Check out some of the work Mayuri has done for the ALS community:
- Mayuri and I were interviewed live about the Act for ALS bill on a nationally syndicated news show.
- Mayuri and her message was mentioned in front of the United States Congress.
- President Joe Biden mentioned Mayuri by name as he was signing the Act for ALS bill into law (at the 20:40 minute mark)
Despite the achievements above for the ALS community, she (and our family) encounter the problems that many pALS face (people with ALS).
Insurance has exhausted its resources
Two years ago, we fought against Mayuri's insurance, and ultimately won her 24/7 approval for Nursing services, plus 24/7 Home Health Aide services. Unfortunately, the pandemic caused a massive shortage of nurses nationwide. The demand for healthcare staff during COVID has left our family to make major changes, like our mother having to retire from a job she loved - all so someone could be home to tend to Mayuri's skilled care.
We've called insurance numerous times, who have been trying to locate any agencies with available, qualified nurses. We've been led down many times to Nursing Agencies who've promised available staff, only to be told that even those nurses were now out sick, accepted jobs elsewhere, etc.
Some reasons for the shortages? Agencies have told us that Nurse burnout, being compensated at a higher rate in a hospital that private nursing agencies can't compete with, and calling out for sick-leave - are all the reasons.
We've personally contacted numerous nursing agencies. Even her insurance was willing to contract with any out-of-network agencies that could provide staffing - but no luck. Week after week, month after month - the "backup" care my mother was filling in for, turned into a full-time job, affecting the life of Mayuri and our mother.
We've called insurance numerous times, who have been trying to locate any agencies with available, qualified nurses. We've been led down many times to Nursing Agencies who've promised available staff, only to be told that even those nurses were now out sick, accepted jobs elsewhere, etc.
Some reasons for the shortages? Agencies have told us that Nurse burnout, being compensated at a higher rate in a hospital that private nursing agencies can't compete with, and calling out for sick-leave - are all the reasons.
We've personally contacted numerous nursing agencies. Even her insurance was willing to contract with any out-of-network agencies that could provide staffing - but no luck. Week after week, month after month - the "backup" care my mother was filling in for, turned into a full-time job, affecting the life of Mayuri and our mother.
Working 12 hours per day, 7 days per week PLUS a few nights being awake for 12 hours? It's unsustainable. Our mother has already fallen twice from exhaustion. Both times she fell on the knee she had surgery on. But she's forced to stay awake even throughout the night - because Mayuri requires frequent oral/endotracheal suctioning, Cough Assist, or other skilled needs.
Privately paying for Help
We are forced to look privately for help and compensate these skilled caregivers at a higher rate.
But simply put - we cannot sustain paying for this on our own, thus we need help.
But simply put - we cannot sustain paying for this on our own, thus we need help.
The urgency is very palpable. Mayuri - even in her paralyzed state - was actually searching for an online job in order to pay for her own care. How can we expect a paralyzed pALS, on a ventilator and a feeding tube, to use her eyes to earn money for her own care? She should be focusing on her happiness, not worried about if we can afford help.
I humbly ask that you consider donating towards this ongoing and expensive cause. Until the situation with nursing stabilizes - we are asking for anyone to consider contributing towards my sister's care.
We are usually not ones to ask. The advocacy experience has forced us to become critical thinkers in accomplishing goals - but we are also human. Mayuri is still suffering from advanced stage ALS and needs help - and quite frankly, that is something that both my mother and I simply cannot provide on our own. Prior GFM funds have been fully used.
If you wish to contribute via another method, where 100% of your funds will go towards Mayuri's care (with no commission deducted), you can contact me (Mayank) and I can provide an address for a check, or Zelle info.
We welcome anyone who is able to be a consistent/monthly contributor. You can do so via GFM or Zelle as well.
All funds will be deposited into The Mayuri Saxena Trust. All proceeds will be 100% for Mayuri's needs, to support her so she can continue the fight for ALL ALS PATIENTS. If Mayuri's safe and well-cared for, she build upon the tremendous work she's done for the community. (Upon closure of the Trust, the remaining will go to Mayuri's non-profit of choice "Youth Boxing for Change".)
Many thanks to:
- Alberto Ortiz , owner of Work Train Fight boxing gym in SoHo NYC. He was Mayuri's personal trainer when her ALS symptoms started, and now is one of her closest friends. All these wonderful videos are shot by, edited, and created by him. A labor of love - thank you.
- Tawheed Kader , a brilliant SaaS / techie whiz who helps entrepreneurs build Go To Market machines. He is the wizard behind the highly effective HelpMayuri.com website that mobilized up to 10k users to contact members of Senate and the House, which led to the passage of a federal bill in USA. He is a personal friend of our family, truly giving his best talents to help her and 30k others, thank you.
- The Evelyn Frank Legal Resource Program at NYLAG (New York Legal Assistance Group). This is a wonderful organization that provides free legal services for the underrepresented, and they've helped Mayuri secure very important services that have helped keep Mayuri at home while retaining her benefits. Thank you Peter Travitsky and the entire staff.
Many thanks to:
- Alberto Ortiz , owner of Work Train Fight boxing gym in SoHo NYC. He was Mayuri's personal trainer when her ALS symptoms started, and now is one of her closest friends. All these wonderful videos are shot by, edited, and created by him. A labor of love - thank you.
- Tawheed Kader , a brilliant SaaS / techie whiz who helps entrepreneurs build Go To Market machines. He is the wizard behind the highly effective HelpMayuri.com website that mobilized up to 10k users to contact members of Senate and the House, which led to the passage of a federal bill in USA. He is a personal friend of our family, truly giving his best talents to help her and 30k others, thank you.
- The Evelyn Frank Legal Resource Program at NYLAG (New York Legal Assistance Group). This is a wonderful organization that provides free legal services for the underrepresented, and they've helped Mayuri secure very important services that have helped keep Mayuri at home while retaining her benefits. Thank you Peter Travitsky and the entire staff.
Organizer
Mayank Saxena
Organizer
Flushing, NY
