Pollari Family ALS Treatment Plan
Donation protected
Update on fundraising initiative:
I am requesting additional financial support for the interventions I will need to be able to complete the Mayo stem cell trial and potentially become engaged in the Massachusetts General Biogen C9ASO trial this fall. I am half way through the Mayo trial, with two more treatments to go on April 14th and then July 14th. My condition has been progressing, with some improvements like the toes on my left feet are now moving again, after three months of no movement. But my swallowing, eating and breathing have become borderline. So I need to have a feeding tube installed at the end of April, to supplement what I can still eat by mouth. I also need to begin using breathing support at night to keep CO2 levels down. The additional requested funding support will help us financially support these interventions and home nursing support as needed . Our plan is for me to continue working until July first, and then go on social security disability and medicare. This funding will help support the cost of these medical interventions, and help Stephen and me absorb the loss in my income for the rest of the year. I am so grateful for the support I have received, and I'm hoping that my supporters can spread this story to others.
Previous story:
This fundraising initiative will support the development and implementation of a balanced protocol to heal genetically based ALS that can benefit not only me, but many ALS patients. My Father died of ALS in 1995, two years after his diagnosis. My Father's cousin died of ALS a year earlier. Three of my Father's cousin's six children have since died of ALS due to our familial C9orf72 gene. I was diagnosed with bulbar onset ALS by Mayo Phoenix on February 14, 2020. I am 63 years old, just like my Father when he was diagnosed. My ALS is progressing with affects to my speech, walking gait and breathing. I'm currently working with HealingALS.org to heal my ALS through functional medicine and acupuncture. I am also a participant in the Mayo Phase II intrathecal autologous adipose-derived mesenchymal stromal stem cell trial. My four quarterly treatments will start in late October of 2020 and end in October of 2021. Mayo covers medical costs, but I have to cover travel and lodging for monthly trips for one year. I plan to heal my ALS within a 2-5 year period or at least stop progression. What I do over the next year will impact this plan, with results affecting not only me but my broader family because other family members have tested positive for the C9orf72 gene.
The requested funding would support my creation and testing of a "model protocol" that members of my family and other people with ALS can follow. My protocol and history of results will be available to HealingALS.org and PatientsLikeMe.com to allow broad access to the protocol. The results of my participation in the Mayo stem cell trial will benefit many ALS patients. The requested funds will help to pay for medical travel for the one year long Mayo stem cell trial, doctors appointments, supplements and alternative treatments over the next year. Funding is required immediately to help defray costs already spent. Any and all contributions to this fundraising are much appreciated.
I am requesting additional financial support for the interventions I will need to be able to complete the Mayo stem cell trial and potentially become engaged in the Massachusetts General Biogen C9ASO trial this fall. I am half way through the Mayo trial, with two more treatments to go on April 14th and then July 14th. My condition has been progressing, with some improvements like the toes on my left feet are now moving again, after three months of no movement. But my swallowing, eating and breathing have become borderline. So I need to have a feeding tube installed at the end of April, to supplement what I can still eat by mouth. I also need to begin using breathing support at night to keep CO2 levels down. The additional requested funding support will help us financially support these interventions and home nursing support as needed . Our plan is for me to continue working until July first, and then go on social security disability and medicare. This funding will help support the cost of these medical interventions, and help Stephen and me absorb the loss in my income for the rest of the year. I am so grateful for the support I have received, and I'm hoping that my supporters can spread this story to others.
Previous story:
This fundraising initiative will support the development and implementation of a balanced protocol to heal genetically based ALS that can benefit not only me, but many ALS patients. My Father died of ALS in 1995, two years after his diagnosis. My Father's cousin died of ALS a year earlier. Three of my Father's cousin's six children have since died of ALS due to our familial C9orf72 gene. I was diagnosed with bulbar onset ALS by Mayo Phoenix on February 14, 2020. I am 63 years old, just like my Father when he was diagnosed. My ALS is progressing with affects to my speech, walking gait and breathing. I'm currently working with HealingALS.org to heal my ALS through functional medicine and acupuncture. I am also a participant in the Mayo Phase II intrathecal autologous adipose-derived mesenchymal stromal stem cell trial. My four quarterly treatments will start in late October of 2020 and end in October of 2021. Mayo covers medical costs, but I have to cover travel and lodging for monthly trips for one year. I plan to heal my ALS within a 2-5 year period or at least stop progression. What I do over the next year will impact this plan, with results affecting not only me but my broader family because other family members have tested positive for the C9orf72 gene.
The requested funding would support my creation and testing of a "model protocol" that members of my family and other people with ALS can follow. My protocol and history of results will be available to HealingALS.org and PatientsLikeMe.com to allow broad access to the protocol. The results of my participation in the Mayo stem cell trial will benefit many ALS patients. The requested funds will help to pay for medical travel for the one year long Mayo stem cell trial, doctors appointments, supplements and alternative treatments over the next year. Funding is required immediately to help defray costs already spent. Any and all contributions to this fundraising are much appreciated.
Organizer
Lynette Pollari
Organizer
Ohkay Owingeh, NM