Michael Fedak's Battle with ALS

In August 2018, Michael Fedak was diagnosed with a life-changing disease, Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s. Michael (39) is a brother, husband, stepfather, uncle, friend, army veteran, mentor, and HERO. With his diagnosis, he was given a 3-5 year life expectancy. Recent medical advances in Amniotic Stem Cells have provided a treatment opportunity that slows progression exponentially.

This fundraiser is to provide him with this medical opportunity. Unfortunately, this can only be done Done outside the USA and needs to be administered in 3 separate cycles. The 2nd cycle needs to start ASAP and it is quite expensive. The First one has already been completed in Thailand, thanks to our original fundraiser and the wonderful people who donated. This first treatment respectively gave him a couple more years of life. See here

Since his first stem cell treatment, The Covid-19 virus has taken its toll on a lot of the world, the poor, the wealthy, everyone is affected. It is truly tragic what has happened and because of closed borders, Michael has been unable to consider leaving the country for the second treatment. Until now. Medical Visas are being issued again.

October 2020, Mike is a humble man and would never ask for anything, especially during such a trying time, so it is our duty as friends and family to do it for him. With all of our family and friends’ prayers, he will hopefully remain at this stage until the second set of Amniotic stem cells can be administered or and until the FDA approves Nurown. We have currently raised/saved $10,000 for the second stem cell treatment which leaves us with $30,000 more to raise ASAP, and another $40,000 to complete the treatment. All efforts are being made to continually research the best treatment option.


---------Michael's Story----------

Michael is an Army Veteran, who on multiple occasions has put his life on the line for our freedom. He joined the Army at age 19, with thoughts that the military would help him pay for culinary school and he would get to explore food around the world. He finished basic training and was home only a home a couple of months before 9/11 happened. He was called to duty shortly after.51896304_1602705140279560_r.jpeg

Michael spent one year in Afghanistan/Uzbekistan and three in Iraq. while deployed to the Middle East, Michael was exposed to numerous burn pits, radiological hazards, and toxins all of which took a toll on his neurological system. The sad thing was the Pentagon knew of the hazards they were sending troops into and unfortunately Michael is now suffering amongst countless veterans.

Click the link here for more information on K2 airbase Uzbekistan.
https://www.mcclatchydc.com/news/nation-world/national/national-security/article238510218.html 51896304_1602705179776912_r.jpeg

He spent the rest of his career repairing and testing weapons while simultaneously training and developing soldiers and new weaponry. He finished after 10 years of service in 2009 and was forced to medically retire due to a back and shoulder injury he sustained. he then focused on his life long passion for food by continuing to work in multiple restaurant hotspots in Salt Lake City, UT (17 establishments in total) until he decided to go to Business School in 2012.

February 2015, Michael moved to Hawaii to finish business school while simultaneously exploring the island's food and culture. Hawaii is a melting pot for Asian cuisine and is a tourist megacenter. He embedded himself in the wedding in the catering industry until he graduated in 2017. Upon graduation, he became a business consultant for food and beverage. At that time he was consulting as an operations manager for an event production company, a private chef/caterer, and a bar manager. His aim was to soon start another degree in agriculture and start his own hydro/aqua farm ran by veterans.

November 2017, Mike decided it was time to put everything he learned in the last 20 years working food and beverage to use and he accepted a position at a Hawaii Golf Course as the F&B Operations manager, his side quest was to better imbed himself in the industry and to get involved with the charities and fundraiser that were often held on the grounds. 51896304_1602705287773708_r.jpegThis would help him come up with the funds to start the farm. He himself is a veteran and knows how hard it is to find work where the employer is sensitive enough to understand the needs of a veteran. If he could combine both elements He would provide veterans a place to work and possibly live, where they can relax and feel productive at the same time. This was and still is Michael's goal, his fundraiser will help him live long enough to help other veterans.

 "No-one should go hungry, but eating crappy food isn't an option either". =Mike’s mantra as a chef.


In February 2018, Mike noticed his left hand started to cramp when he would pick things up at work, if he used it to cut food, write or open a bottle or jar, he also noticed that his wave looked different. He thought it could have been from malnutrition. He supplemented with a USANA vitamin regimen, cut out any processed food, alcohol, and sugars. He started to feel amazing and had lots more energy but... After about 2 months his hand muscles began atrophying and a twitch developed in his triceps and shoulder. He went to acupuncture, a nutritionist, a chiropractor, tried cupping, physical therapy, Mya fascia work, cold/hot therapy, you name it, but nothing helped. The muscles continued deteriorating. His Neurologist said she had suspected a neurological disease as the culprit, and they should do everything to rule that out. They did... via MRIs, X-Rays, EMG's, PT, spinal taps, blood tests Etc. They ruled out pinched nerves, tumors, cancer, MS, or clots but not ALS.

Around June 2018, along with the other symptoms, his forearm and bicep started to become so weak he was no longer able to lift the left arm. The physicians decided it would be best that he start treatment for ALS. Riluzole oral medication and the FDA had recently approved Endavarone aka Radicava that would need to be administered through a port in his chest. He began the treatment after the procedure/surgery was completed for the chest port with a catheter leading to his heart. Simultaneously he had been receiving treatment for an old injury leading to chronic back pain, to which he has had numerous epidural and facet injections alongside pain management therapy. All circumstances combined, in January 2019,  Mike was unable to continue working, his wife cut back hours to care for him, and in turn, all assets and savings were depleted, they were forced to leave dreams in Hawaii and return to family in Utah June 2019.

Oct 2019, he has weakness in his legs and arms, back, stomach, and neck as well. He can no longer tie his shoes, do up his buttons, shower unassisted, or eat without help. The Radicava treatment is supposed to significantly slow the progression of the disease and he admits feeling better while on the treatments. It's safe to say the Radicava treatment has probably given him a couple more years of life.

December 2019, Michael's first cell treatment in Thailand was a success,  the results are nothing short then incredible, his energy levels are back, the twitching in his body has all but subsided, as well as the cramps typically associated with ALS. It is theorized that the second set of stem cells will help him regain some mobility in his limbs as well as slow the progression of paralysis. the third set is theorized to plateau the disease. Neurone is the only promising study available in the US and in clinical trials ready to be approved by the FDA. He must get these stem cell treatments while he waits for Nurown to be approved.51896304_160270587781232_r.jpeg51896304_1602705891244065_r.jpeg

June 2020, the veteran's administration suggested that Michael move to Florida near a spinal cord injury center in Tampa in order to get better treatment. Since the move to Florida in July, the VA has issued Michael many improvement devices to help his day-to-day getting around to include a robot that helps feed him, a hospital bed, and a computer he controls with his eyes and mouth. He will soon be receiving a powered wheelchair also. They have automated is living space so everything is now voice-controlled. He is also working with a dietitian and a nutritionist to maintain his weight as well as occupational and physical therapy. He will continue to receive treatment in Florida until the Nurown cells are available.51896304_1602705930638954_r.jpeg

ALS is not something anyone can plan for. Treatments for ALS have been scarce and until recently the hope for a cure was out of sight, there is still a chance he can beat this disease.


Your financial support will help provide Michael with this medical opportunity. Please look below for ways you can donate and learn more.


You can follow him on

Instagram
@mikey_81_

Or

Facebook
@Michael.fedak.31

Https://www.Facebook.com/Michael.fedak.31



If you would rather you can also donate via app:

Venmo
@michael_fedak81

Or can be mailed to:

Help Mike fight ALS
PO Box 26542, SLC, Utah 84126-0542

Please read on about Michaels ALS contributing factors:
https://www.militarytimes.com/news/pentagon-congress/2020/02/27/post-911-veterans-attribute-deadly-cancers-to-contaminants-at-us-base-in-uzbekistan/
https://www.mcclatchydc.com/news/nation-world/national/national-security/article238510218.html
https://www.mcclatchydc.com/news/nation-world/national/national-security/article239856133.html
https://www.publichealth.va.gov/exposures/burnpits/
http://www.alsa.org/research/focus-areas/environmental-factors/
http://www.alsa.org/als-care/veterans/military-white-paper.html
https://translationalneurodegeneration.biomedcentral.com/articles/10.1186/s40035-017-0087-3

Medications:
Riluzole: https://en.wikipedia.org/wiki/Riluzole
Endavarone: https://en.wikipedia.org/wiki/Edaravone
deeana protocal

Clinical Trial Locations:
Nurown trials from Brainstorm-Cell Therapeutics
https://clinicaltrials.gov/ct2/show/NCT03280056
University of California Irvine Alpha Stem Cell Clinic, Cedars-Sinai Medical Center, California Pacific Medical Center, Massachusetts General Hospital, University of Massachusetts Medical School, Mayo Clinic Rochester, Minnesota
Actual Study Start Date: August 28, 2017
Estimated Primary Completion Date: October 2020
Estimated Study Completion Date: December 2020

Human Amniotic Stem Cells
https://en.wikipedia.org/wiki/Amniotic_stem_cells

United Access Medical Thailand- video patient share, generic https://www.youtube.com/watch?v=dDrhQ1uJbF4
United Access Medical Thailand- the website for regenerative, https://uniqueaccess.com/treatments/regenerative-medicine/
United Access Medical Thailand- Testimonials from ALS patients https://uniqueaccess.com/results/testimonials/

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Donations

  • Anonymous 
    • $100 
    • 1 d
  • Molli Wilcock 
    • $50 
    • 2 d
  • Anonymous 
    • $30 
    • 7 d
  • Kaydee Burns 
    • $50 
    • 7 d
  • Leeanne Ott 
    • $25 
    • 7 d
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Organizer

Kimberli Fedak 
Organizer
Brooksville, FL
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