Help Matt Beat MS with HSCT
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Hi, my name is Krystal. I am raising money on behalf of my husband Matt so that he can pursue an amazing treatment called HSCT in July 2022 to help him stop MS from taking over his life. Below are some highlights about why we are raising money, but if you would like to receive updates and get more information about Matt and what MS and HSCT are, please subscribe to the site I've created to document and share this journey.
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Additional Note: Private donations can also be done by mailing us a check or making a transfer through Venmo (@kafowler16).
Additional Note: Private donations can also be done by mailing us a check or making a transfer through Venmo (@kafowler16).
Finding out Matt had MS
Matt is an amazing husband and an even better father to our two young boys. After his love for his family, I would say his two other joys in life are hiking and his work as a food scientist. Just weeks after we welcomed our youngest son into the world in February this year, we were devastated to slowly see Matt's body begin turn on him.
We would first see fatigue hit him like a ton of bricks, then realize that it was more than just newborn fatigue when the other symptoms hit. It progressed to tingling in his arms and legs. Then, he started having difficulty getting to a standing position without his legs trying to give out on him. It became even worse when it started affecting the grip in his hands to the point he had difficulty holding the baby. Eventually, he started having difficulty talking. It came to a peak in June during an attempt at a family vacation when he was starting to have trouble walking.
We would first see fatigue hit him like a ton of bricks, then realize that it was more than just newborn fatigue when the other symptoms hit. It progressed to tingling in his arms and legs. Then, he started having difficulty getting to a standing position without his legs trying to give out on him. It became even worse when it started affecting the grip in his hands to the point he had difficulty holding the baby. Eventually, he started having difficulty talking. It came to a peak in June during an attempt at a family vacation when he was starting to have trouble walking.
In August this year, Matt was finally able to get in to see a neurologist. After MRIs on his brain and spine, as well as a lumbar puncture, our worst fears were confirmed - Matt has multiple sclerosis. The only good news was by the time he got in to see the neurologist, his symptoms were beginning to go into remission. The bad news was MS symptoms always come back. It eventually relapses, and the symptoms come back full force, and often even worse.
Our source of hope
While traditional disease modifying treatments today only slow down the disease, there is a treatment that has been around for over 20 years called hematopoietic stem cell transplantation (HSCT) which has been highly effective in stopping MS long term. (https://www.msaustralia.org.au/news/real-world-follow-up-study-of-ahsct-for-ms/ )This procedure uses chemotherapy to wipe out the immune system, then uses the patient's own stem cells to reboot the immune system. Multiple studies have shown that not only does it stop MS, but the earlier it is used to treat MS, the more effective it is in stopping the disease. This is the closest thing to a cure there is.
So, we knew when we received the diagnosis, we needed to put this in motion. A large part of the urgency for having this done is the longer we wait to pursue this treatment, it increases the likelihood of more damage being done to the brain and spine. The thing about MS is that, regardless of what is done to slow down or even stop the disease, you cannot reverse the damage. It was not a question as to the effectiveness. The question is where and what type of HSCT treatment will help give Matt a chance at a life without MS while also reducing the risks that come with it.
We also knew immediately that doing this in the United States was not an option we could consider. In the US, this procedure costs over $100,000, and the procedures here are in clinical trial phases and the major HSCT trial in the US is using a much higher dose of chemotherapy. It would also require Matt to get much worst since its only being looked at here as a last line of defense not a first line of defense.
It is for this reason we are pursuing a non-myeloblative HSCT treatment in at a national research hospital in Moscow. The price tag is still high. It costs $53,000 just to cover the cost of the treatment, and additional costs will be associated with the travel needed to travel to Russia and taking the time off of work. Matt will need to be on leave from work for a minimum of two months, potentially three to four depending on how recovery goes in that first month back. However, the costs and risks are much lower on both ends.
Matt has already applied and been accepted to receive HSCT. We have received a July 2022 treatment window, but we were just notified that a treatment window has opened up for March 16, 2022.
It is for this reason we are pursuing a non-myeloblative HSCT treatment in at a national research hospital in Moscow. The price tag is still high. It costs $53,000 just to cover the cost of the treatment, and additional costs will be associated with the travel needed to travel to Russia and taking the time off of work. Matt will need to be on leave from work for a minimum of two months, potentially three to four depending on how recovery goes in that first month back. However, the costs and risks are much lower on both ends.
Matt has already applied and been accepted to receive HSCT. We have received a July 2022 treatment window, but we were just notified that a treatment window has opened up for March 16, 2022.
The reason for raising the funds now is that Matt has opted to forgo any traditional MS treatment options to delay any relapses before he goes to the research hospital in Moscow to give himself the highest odds of this being successful and effective. The reason for forgoing traditional treatments in the meantime is HSCT has the greatest chance for stopping MS if used as the first line of treatment without any prior use of disease modifying drugs. Due to this, if Matt's MS relapses again and the symptoms become severe enough to be debilitating, Dr. Fedorenko and his team are willing to do what they can to make this happen around that earlier date. If the date gets moved up, we are trying hard to have the funds available to pay for the treatment.
So, thank you. Thank you from the bottom of my heart for helping Matt gain this chance to live a life free from MS. Thank you for giving our family a chance to live free of the stress of watching this take over his life. Thank you for our sons, who will get a chance do things like go hiking and learn outdoor survival skills with their father. Thank you for your kindness and generosity.
We'll never be able to fully express how much this means to us.
We'll never be able to fully express how much this means to us.
Sources about MS & HSCT treatment:
Information about MS as a whole:
Information about the Russia HSCT treatment:
Myeloblative vs Non-Myeloblative HSCT options for MS in layman terms:
News story on a recently published study on the efficacy of HSCT as a long-term treatment for MS:
Sample study on the safety and efficacy of HSCT treatment for relapsing MS:
Beat MS Trial:
Info about Selma Blair's new documentary that is out in select theaters and on Discovery+ about her experience with MS and HSCT here in the US using myeloblative HSCT:
https://www.hollywoodinsider.com/introducing-selma-blair/
*I will be withdrawing the funds on Matt’s behalf and depositing in a bank account in my name on a monthly basis. I manage our finances and will be arranging to send the funds to pay for the procedure when the time comes.
*I will be withdrawing the funds on Matt’s behalf and depositing in a bank account in my name on a monthly basis. I manage our finances and will be arranging to send the funds to pay for the procedure when the time comes.
Co-organizers (2)
Krystal Ann Fowler
Organizer
Kalamazoo, MI
Matthew Fowler
Co-organizer