Linsey has chosen to fundraise with Help Hope Live because donations are tax deductible for contributors and will only be used to cover medical and related expenses.
For the quick read…HSCT therapy is a combination of chemo and using one’s own stem cells, a procedure to heal your body that is widely used in the US for multiple myelomas. It is not currently approved in the US for the treatment of multiple sclerosis, although it is finally in clinical trials here.Linsey was diagnosed with MS 17 years ago, and although it was very benign for 15 years, it has transitioned to an aggressive form of SPMS (secondary progressive).
She recently transitioned to a walker and if not addressed will soon be in a wheel chair. At this time, her brain shows no atrophy, though that is likely the next course.You can help her attempt her only chance to stop the progression. There are no current pharmaceutical treatments available, outside of Ocrevus, which may slow, but not stop, the progression.
HSCT stops progression fully in 80% of cases. Additionally, 40% of those patients see improvement in current disability.
It is a long-haul journey, and we can’t do it alone.Her full story is below, for those wanting to understand the first-hand account. It is long, but we feel worth the read.Thank you for considering the opportunity to help change a life.
Fundraiser Story (long cut)For those who know me, know I’m an active, independent person, which makes it so difficult to write a blind ask to help sustain hope in what has been a two-year journey of living on faith, determination, and a spirit that just won’t quit…it is also a story that, without intervention, offers little hope.
Seventeen years ago, I was diagnosed with multiple sclerosis (MS), a condition I share with my mom: A magnificent woman who at 76 is walking three miles a day, opening Kiwanis clubs across KY and TN, continuing to build membership in GA, all while maintaining her volunteer work in homelessness and poverty. A model superwoman whose footsteps we just always thought I would follow.
In terms of service, being feisty and living in faith, I think I have! My health journey, however, has not fared as well. Actually, my health journey WAS remarkable. So, at the very start of this lengthy story, I must say that I am beyond blessed, humbled, and grateful that I have had 15 years of grace with this disease. Until just a few years ago, few even knew it was a factor.It was exactly two years ago, when I first tripped walking up a small set of stairs, to accept an award of all things, and fell in front of my entire company. This preceded a series of falls, replete with black eyes and split chins and wounded egos. And so started a two-year battle with lots and lots of doctors, a whole host of self-advocacy, and just an exhaustive effort of trying to determine what exactly what was wrong with me. Of course, MS was my first thought, but repeatedly I was told “No” by the doctors until I believed them.
I will not detail the entire story, but I eventually landed at the Cleveland Clinic where I learned that yes, yes indeed, my very benign MS had transitioned to a very aggressive progression.
How aggressive? In April of 2022, I walked down the aisle and hiked a mile into the woods in a wedding dress for my perfect wedding photo, and today? I cannot even walk across my kitchen unsupported. I have always needed to be unique. My MS (a disease of the blood brain barrier which results in lesions and demyelination of your central nervous system) is no different. My MS has NO new lesions. Mine has NO demyelination. It is why I flew to Cleveland: To find the best of the best to explain why my MS showed no signs of activity, and yet I started using a cane for balance last year, moved to a walker for a little extra support in May, and now am accepting the fact that “support alone ” is no longer safe or viable. The time has come for a more permanent solution, as we contemplate modifying my car to hand controls to maintain any level of independence. In just two years, my mobility has declined significantly, with my DSS (disability scale score) jumping from a 0 to 6.5. Eight is pretty much the top end of that scale. This journey is not done, and sadly, there is no predicting how long or to what extent the decline will continue. What we do know, is this is no longer just about physical decline; it’s about the silent potential of brain atrophy and the profound impact this would have on my life. It’s not the fear of disability that weighs on me the most, but the knowledge that this condition can steal my mind and possibly take my words, my memories, my cognition. Yet, we never give up on hope. Many MS patients in the US know of the promising treatment called hematopoietic stem cell transplantation (HSCT), a procedure that is actually considered a standard of care in Europe but is not yet available here. I will not rail against pharma in the US, I will not rail against pharma. I will contend that the US should lead the world in progress and is about a decade behind on this one. We finally started clinical trials here, but I don’t qualify. More importantly, I am out of time. But there is a clinic in Mexico leading the charge, and it accepts patients from around the world, having treated nearly 1,700 people worldwide. What we know:Eighty percent of patients, regardless of MS type or progression , stop the disease. Full stop.
Forty percent see not just a stop, but a repaired improvement at some level.
The HSCT process is intense—it involves chemotherapy that will completely strip me of my immune system, followed by a reboot with my own harvested stem cells. It is invasive. It is lonely. It is in another country, where you are quarantined with a solo caregiver (my amazing mother). For 27 days, I will have five rounds of chemo, lose my hair, lose all strength, be solely reliant on the care of others, and slowly start again.
It is also, clearly, not cheap. $57,500, is price of hope at this groundbreaking facility. (The clinic recommends $65,000 for the actual costs plus ancillary expenses)Coincidentally, one year of any US drug for reducing relapses of MS, but still does not , is also $50,000. I just can’t use insurance to cover this one. And this would be a one-time expense instead of $50k every year for the rest of my life.It gets harder.
The hardest part of this journey is understanding that recovery often begins with a worsening of symptoms for six months. And, finally, the true outcomes can take up to two years. It’s a risk that weighs heavily on my heart. But after countless conversations, my husband, my children, my family, and I have come to a unanimous decision: The risk of doing nothing is far greater than the hope this procedure offers. I’m launching this fundraising effort to help cover the cost of this crucial treatment. Your support will not only provide the financial assistance I desperately need but also strengthen the hope in this difficult time. Every donation, no matter how small, brings me one step closer to fighting back against this disease and reclaim my life.
I chose HelpHopeLive for a very unique opportunity. You are donating to THEIR nonprofit. I am THEIR client. This money is designated funding for me. They pay all of my bills directly and issue all reimbursements with documentation…. this not only brings you the confidence of how and where this money goes, it also means 100 percent of donations both financial and in- kind (ie donated use of facilities/services for fund raising) are tax deductible. They do keep a higher percentage of funds at 5.9% for credit cards and 3% for check and ACH… Absolutely reasonable for the services provided. They not only serve as this fund sourcing platform, but help me connect to other services needed and provide support in marketing and facilitating in person fundraising.
To learn more, visit www.hsctmexico.comI have set the recommended goal for the treatment, the travel, and the aftercare.
As a donor, I also invite you to follow this journey in my Facebook group. I want to invite you to see your donation at work.
Thank you for being part of this journey with me. Your kindness and generosity mean the world.
