HSCT Surgery for Hopeful MS Girl
With crowdfunding we hope to raise the money for a truly lifesaving surgery for Rubiana Malla, aka “Hopeful MS Girl.”
Hematopoietic Stem Cell Transplantation (HSCT) is an established chemotherapy medical treatment (20+ years) demonstrated to be highly effective in halting disease progression in neurologic autoimmune diseases such as Multiple Sclerosis (MS). Biologically, there is a 100% success rate with this procedure as measured by no new MS lesions–references below. There are also many personal success stories, and we even personally know of one MS patient who has had this surgery and is now walking and has two babies. The total cost including travel for Rubiana and one caregiver is approximately $90k Canadian dollars. Unfortunately, Rubiana has been unable to work for many years.
If you can find just a few dollars to help Rubiana reach her goal and heal her ailing immune system, she promises to help herself, with exceptionally dedicated post-operative physical therapy to regain as much function as humanly possible.
For many more details (the “full story”) please see below.
How You Can Get Involved
Even just $10 would make all the difference: $10 x 9,000 donations = GOAL! Please consider making a Donation which will give you access to a monthly newsletter update on Rubiana’s progress (you may opt out any time). Payments can be made by credit card (you specify the amount), e-transfer or cryptocurrency (see below). You may also share this website https://hopefulmsgirl.org like I’ve done over on https://ericsayre.com visit our Twitter page at https://twitter.com/HopefulMSGirl1 or check out our new campaign on GiveSendGo, a short heartfelt letter from Rubiana in her own words https://www.givesendgo.com/hopefulmsgirl
* e-transfers do not take a 3% fee
CAD $ Raised / $90k Goal
Bitcoin (BTC): 3QvChG7oLEyJXcSMakVTPSFhfBF6CgrLD8
Ethereum (ETH): 0x7982BEAc71E206bE6728D0e66FC521Ab855629B7
Ripple (XRP): rnE1VesutbarwW25C499vTzjWdSQLxe7yr
Litecoin (LTC): ltc1qahzaaqs4mevyqx6e9fhahl48ju589kdeyddmrv
Dash (DASH): Xu5hwDjH5tmayght95SZ7dt9fQ9VVwLBtm
Our Open Letter at GiveSendGo
Lying in bed the other day I realized this is my life. Extremely lonely, depressing, with no joy or happiness. I can feel everything but move nothing. My nightmare of multiple sclerosis began at 21, and over the years I lost potential lifelong earnings, a husband, kids, happiness, and fulfillment.
But there is now real hope, and it could be truly life reversing, even at 52 years old: Hematopoietic Stem Cell Transplantation (HSCT). While a mouthful, this is a proven cure for MS, as two Canadian clinical trials demonstrate (Atkins et al 2016 and Uccelli et al 2019) where 100% of patients had no new MS lesions on MRI. Unfortunately, Canada does not offer HSCT to MS patients, but in Mexico, Doctors Ruiz Argüelles and Gómez-Almaguer at Clínica Ruiz have performed more than 2500 HSCT procedures over 20 years, with over 600 for MS, including relapsing and progressive patients, and 78% regained function.
I completed half my credits before losing use of my hands, but I need my hands to finish school and contribute to society. No one wants to have to beg for help, but this is where I am. I can provide medical documentation that I am not a scammer. Sadly, this is my true life story to now, but we can change that with your help. My best friend and I hope you will visit our website, which has yet to gain traction. We hope you will read the whole story including the science. If you believe in our cause, you could make a world of difference with your donation.
Please visit https://hopefulmsgirl.org/
A message from Rubiana Malla
If you help fund my operation, I absolutely promise you I would not let you down, and lie around waiting for some miracle recovery. I would work harder than anyone, and enjoy every minute of it, knowing my fight is finally on level ground. This opportunity is worth more to me than anything. Please be aware that I am aware of the risks. Given where I am now, and where I know I could be if given this opportunity, the risk reward for me is unquestionable, even if it means a risk of death.
I hope you really consider my plea. If you help fund this life saving operation on me, I would be forever indebted and forever grateful for helping me turn off this downward escalator.
The Full Story
Rubiana’s history, from diagnosis till now
My name is Rubiana Malla. I am an MS patient from Vancouver, BC, who was diagnosed in 1992. Since that time, my MS was relatively stable until nine years ago, when it took a turn for the worse. I stopped walking with a cane in 2010, and stopped driving within a few months. However, as recently as 2018, I was able to swim a dozen consecutive laps in the pool using my arms. I was also able to walk in the pool with the aid of active assistance initially to get me started (after which I could do it myself), and a floating device to hold onto, or holding the edge of the pool. I could also weight bear on dry land when using a standing lift to help get to a standing position, and then holding onto a grab bar to maintain the erect position. In late February of last year, I took an extended trip to India, where my arms and shoulders were badly injured by physical therapists there (because they do not have machines to assist with standing). As a result, I am currently not able to use my arms or therefore resume my therapy in the pool, because they do not have standing lifts there or any other assistive devices. Up to now, I have never had pain or fatigue, and I have always had full sensation in my entire body including my legs.
Rubiana’s salvation – HSCT stem cell therapy
HSCT is a well proven stem cell-based therapy that completely eliminates the old immune system, and allows the body to rebuild immunity from scratch. The new white blood cells no longer see the patient’s own nerves as the enemy, and the autoimmune response that characterizes MS is halted. The patient is then able to rehabilitate to recoup some of their lost function, through very hard work: no longer running up a down escalator, their hard work can finally pay off, and hard work post-op is what ensures that it will pay off. Considering her innumerable life challenges, Rubiana is the hardest working person I have ever met.
In more detail, from the clinic website
“Hematopoietic Stem Cell Transplantation (HSCT) is an established chemotherapy medical treatment demonstrated to be effective to halt disease progression in neurologic autoimmune diseases such as Multiple Sclerosis (MS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Myasthenia Gravis (MG), all of which are treated at Clínica Ruiz. The “Mexican method” to autograft MS patients employs high dose Cyclophosphamide and Rituximab as conditioning agents to eliminate autoreactive cells of the immune system responsible for damaging autoimmune disease. This treatment approach is a safe & tolerable, yet highly effective non-myeloablative chemotherapy regimen that has been shown to be highly effective to halt underlying autoimmune disease activity & progression. Serious treatment complications are rare, with fewer than 2% of patients requiring hospitalization. Clínica Ruiz is the largest patient volume autoimmune disease HSCT treatment center in the world. Doctor Ruiz Argüelles and Doctor Gómez-Almaguer have performed more than 2500 HSCT procedures during more than 20 years for hematological and autoimmune diseases, out of which over 600 have been for MS. Their transplant related mortality is 0.16%, among the safest treatment records in the world. Positive results have been achieved in over 78% of patients transplanted at Clínica Ruiz, which includes both relapsing and progressive patients. [Biologically, however, there is a 100% success rate with this procedure as measured by no new MS lesions–references below.]”
Is this all marketing mumbo jumbo?
1. Atkins HL, Bowman M, Allan D, Anstee G, Arnold DL, Bar-Or A, Bence-Bruckler I, Birch P, Bredeson C, Chen J, Fergusson D, Halpenny M, Hamelin L, Huebsch L, Hutton B, Laneuville P, Lapierre Y, Lee H, Martin L, McDiarmid S, O’Connor P, Ramsay T, Sabloff M, Walker L, Freedman MS. Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group phase 2 trial. Lancet. 2016 Aug 6;388(10044):576-85.
2. Uccelli A, Laroni A, Brundin L, Clanet M, Fernandez O, Nabavi SM, Muraro PA, Oliveri RS, Radue EW, Sellner J, Soelberg Sorensen P, Sormani MP, Wuerfel JT, Battaglia MA, Freedman MS; MESEMS study group. MEsenchymal StEm cells for Multiple Sclerosis (MESEMS): a randomized, double blind, cross-over phase I/II clinical trial with autologous mesenchymal stem cells for the therapy of multiple sclerosis. Trials. 2019 May 9;20(1):263.
How have we calculated our fundraising goal?
As a longtime MS patient who today has very limited mobility and lives on disability assistance, Rubiana does not have money to pay for this lifesaving surgery herself. Clínica Ruiz has been the world’s leading provider of HSCT therapy for MS patients for 20 years, yet they are very fairly priced. Their fee includes the surgery itself, plus lodging in a private, sterile environment adjoining the hospital for both Rubiana and a caregiver over a period of three weeks, during which Rubiana’s errant immune system will first be eradicated, then rebuilt from the ground up with stem cells, and finally stabilized before she is sent back to Canada. The US dollar cost from Clínica Ruiz at today’s exchange rate plus allowance for airfare totals approximately $85k CAD, hence our goal of $90k CAD, with the relatively modest extra $5k to allow for possible exchange fluctuations between now and then, as well as additional unexpected expenses. Any leftover money not used in the course of Rubiana’s surgery will be put towards her post-surgical rehabilitation program.
Hard work in the gym and pool kept Rubiana mobile much longer than her MS peers, and will allow her to make the absolute most of her HSCT treatment
In the past, over 28 years, by working out in pools, gyms, and physical therapy centres, I have had numerous periods of partial recovery from the devastation of the MS, but have never been able to recover fully, because I have always been trying to walk up a downward escalator. I make gains, then the gains are taken away, then I work as hard as I can, and make more steps forward, before another slide backwards. The uphill battle is so damaging psychologically because I know without this uphill battle, just how hard I can work (and always have), and the benefits that could give to me. When I work out, I improve, always. This is why I am very optimistic that if only the MS can be turned off, all my hard work will pay off.
What surgical outcomes will Rubiana consider a success? – they are modest, but need not be, she will work harder than anyone to maximize the results
First, I would value so much to be able to use a computer keyboard again, so I can complete a Master’s degree and open a private practice as a Counseling Psychologist. I have been through so much, and want to offer help to others with similar experiences. I want to become a contributing member of society, rather than be someone viewed as a drain on the system. But there are many other MS symptoms that I have been plagued with, that I would also like to resolve. For example, the tremors in my hands and loss of fine motor skills not only affect use of a keyboard or smart phone, but also even something as basic as eating or drinking in public. Regaining control over my bladder and bowels would also be so valuable. Even if I never walked on land again, it would make every difference to my life to resolve even a couple of those symptoms. But I also know that if my reduced balance and coordination are improved, I would have a real chance at walking, if I first return to the pool every single day, and work up from there.
Where we are today
Today, Rubiana is confined to a power wheelchair with limited use of her hands – because despite all the hard work in the world, the relentless attack of her errant white blood cells eventually wins, unless we turn off her disease.
IT IS NOT TOO LATE. Help us turn off Rubiana’s disease for good, so that she can hit the gym and pool harder than anyone on Earth, to first rebuild her body, then complete school and attain her dream to help counsel others with similar life challenges.