Help veteran Mikey fight ALS

$28,590 of $250,000 goal

Raised by 194 people in 11 months
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Created August 19, 2018
Holly Cooper
on behalf of Phoenix Michael Thomson
In October 1994, while training with the Marines as a Navy medic, Mike was critically injured in a major explosion  during a training exercise. Two Marines — Mike’s buddies — were killed instantly. Mike had been right next to them at ground zero when the blast occurred.

With second- and third-degree burns over 40% of his body, Mike ignored his own injuries to attend to the other 11 Marines who were wounded, upholding the “finest traditions of the Navy, Navy medicine, and the hospital corps.”

32270066_1534706061491173_r.jpegMedevacked from the blast site by helicopter, Mike began a long and painful recovery — it took two years and left him with extensive scars (exterior and interior), severe tinnitus, and lifelong disabilities.

Mike was being Mike. Ever since he was 16, he has wanted to help others and save lives, working first as a lifeguard, then training as an EMT, combat medic, and surgical assistant in the Navy.

After he recovered from the blast and obtained his degree in Integrative Biology from UC Berkeley, he worked in the medical field. And through his volunteer work, he has helped adults learn to read, assisted people living with blindness, and provided comfort to hospice patients and their families.


On top of all that, Mike has been there again and again to support his family and friends, often going without so that others can be more comfortable.  

This is who Mike Thomson is.

Now Mikey, who has given so much to others, is in a fight for his own life.

The worst diagnosis
In the fall of 2017, Mike started noticing weakness in his arms and shoulders. First he had trouble picking up heavy objects. Then he found that his arms didn’t brace him when he tripped and fell at home. Soon, he couldn’t even lift a glass of milk. 

He visited the ER at the VA a couple of times, but they sent him home with an arm sling and referred him to orthopedics. He knew something else was going on, and he couldn't wait three more weeks for his ortho appointment, so he showed up at physical therapy asking if someone could take a look. After a quick assessment out in the hallway, the PT told him, “You need to go to neurology immediately.”

After three more months of tests and agonizing bureaucratic delays, Mike was diagnosed in March 2018 with amyotrophic lateral sclerosis — ALS.

What is ALS?
Also known as Lou Gehrig’s disease, ALS is a progressive neurodegenerative disease that originates in the brain and spinal cord. It attacks the nerve cells that control all voluntary muscles throughout a person’s body, causing muscle wasting and paralysis.

When you have ALS, you gradually lose your ability to move, swallow, speak, and, eventually, breathe.

When you go through the battery of tests needed to diagnose ALS, you find yourself hoping that it’s cancer, hoping that it’s MS. You hope that it’s pretty much anything but ALS.

Veterans are twice as likely to get ALS.

ALS is nearly always fatal. Most people who receive this diagnosis have two to five years to live, but many have a year or less. 

Stephen Hawking famously lived for 50 years after his diagnosis, but that’s extremely rare. He made the most of his life despite being complete paralyzed, but most of us wouldn’t choose to live that way for long.

Does ALS have a cure?
There is no cure for ALS and no treatment currently on the market that does much. Two drugs are available, but they barely slow the progression of the disease, and they only work for some people. 

But some experimental therapies being studied now indicate some hope is on the horizon (read on for more).

Mike’s current condition
As we write this in August 2018:

- Mike has lost all use of his upper arms. It’s difficult to impossible for him to bathe, dress, feed himself, turn in bed or pull up the covers, or do many everyday tasks without assistance.
- His chewing and swallowing are deteriorating. It’s getting harder to eat, yet it’s critical that he avoid further weight loss (even while he continues to lose muscle and burn far more calories just getting through the day).
- Breathing is starting to get difficult. As the muscles in his diaphragm and chest start to weaken, he often finds himself short of breath, sometimes even when sitting still.
- His legs are weakening. He’s still walking but we don’t know for how long, and at this stage trips and falls are a constant and serious concern (he already had one scary fall that required a 911 call--see below*).
- He can no longer drive, surf, play guitar, paint, run, dive, or do any of the things he used to do.

The promise of stem cells
Some very promising research is happening in the area of stem cell therapy and regenerative medicine, especially for "fast progressors" like Mike. 

NurOwn  (BrainStorm Cell Therapeutics): 
- Currently in a phase 3 clinical trial, NurOwn involves treating the patient's own stem cells with special growth factors, then injecting them back into his spinal cord fluid.
- A single injection of stem cells treated with NurOwn in phase 2 caused participants' rate of decline to slow significantly, stop, or reverse — unheard of in the ALS world.
- BrainStorm is now studying the effect of three injections over six months to see if the positive results hold for longer.
- Mike is trying to get into this trial but a manufacturing delay has put him on hold, and there’s a 50% chance he’ll get placebo and not actual stem cells. NurOwn likely won't be available on the market for two or three years.

Neuronata-R  (Corestem):
- This is a similar stem cell therapy available now in Seoul, South Korea, at the same time it’s being studied in a phase 3 trial there.
- After receiving two doses of stem cell injections, many ALS patients saw on average a 50% reduced rate of decline over six months.
- In 2017, around 20 foreigners traveled to Korea to receive this treatment — it’s the only stem cell therapy in the world that’s available for ALS patients now. We are hoping to get Mikey this treatment as soon as possible.

Other similar studies and experimental treatments are in the works in other countries.

Getting stem cell treatment now can keep Mike going
The VA will only pay for FDA-approved treatment, and it could be three years before NurOwn sees the light of day in the U.S. To slow down his ALS and keep living, Mike needs stem cell treatment now.

One gentleman we talked to recently went to Korea for Neuronata-R stem cell therapy, which virtually halted ALS in its tracks for six months. He’s going back in October for another round.

How your donation can help
Whether Mike can get stem cell therapy through the NurOwn trial or not, he’ll need additional rounds of treatment to carry him until FDA approval, when the VA would pick up the tab.

One round of stem cell treatment at Hanyang University Medical School in Seoul over two months will cost between $90,000 and $100,000 (that doesn't include travel back and forth). Any similar therapy that becomes available will carry a similar price tag.

We know that the goal we've set is a lot to ask for, but Mike is worth millions to us. We’re hoping you can help us reach a lot of people, those who know Mike as well as people who have a heart for veterans and other people suffering from ALS. Stem cells are our only hope to keep Mike with us until someone finds a better treatment, or a cure.

Please help Mike and help us get the word out
We are desperate to save Mikey and keep him in our lives as long as possible. He’s a gifted, giving, unselfish man and a beautiful soul. He has sacrificed so much to his country, his family, all his honorary families, his friends, and everyone he has served in his volunteer work.

Please help us keep Mikey going and help ease his suffering along the way. If you can’t give much, that’s okay — if you could please share this it would really help.

Thank you so much for taking the time to read this and for anything you can do to help our Mikey!

~Sheila Thomson & Holly Cooper

*Mike suffered a bad fall on the sidewalk on August 8, requiring an ambulance and a night in the ER. He couldn’t break his fall and landed on his face, causing a fracture to his cheekbone, multiple cuts and scrapes, a black eye that’s swollen shut, and severe swelling on the entire left side of his face. He was in constant pain, and his appetite and energy level — already very low — took a further downturn. It feels like time is running short — please consider donating what you can and offering him some encouragement. Thank you!
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Michael James Thomson passed away peacefully on Sunday, July 14, 2019, at the age of 48. He was surrounded by family and dear friends and an enormous amount of love.

He fought the disease with the brave spirit of a hero, which he was through and through. Our superhero. Our hearts are broken, but the love he gave will live in us forever.

Wednesday, July 24, 2019
East Hills Community Church
20660 Orange Terrace Parkway (at Van Buren Blvd)
Riverside, CA 92508

Viewing: 11:30 am
Service: 12:30 to 2:00 pm

Full military honors: 2:30 pm, Riverside National Cemetery, 22495 Van Buren Blvd., Riverside CA 92518

Reception immediately following at:
17060 Singingbird Lane
Riverside, CA 92504

All are invited to join us as we celebrate Mike's exceptional life and spirit.

Thank you once again for all of your love and support throughout Mike's year-and-a-half battle with ALS.

This fight is not over — we'll be working with various groups to raise awareness and advocate for more humane clinical trials for people with ALS (pALS) as well as increased funding for ALS research. You can join us:

Sign up with I Am ALS:

Or donate:
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This update has been a long time coming, but we wanted to let you know what’s been happening with Mike and how you have helped him.
Please accept my apologies for the delay and know that we’re so thankful for all the love and support that you’ve shown Mike, his family, and me, whether it’s been encouraging words, financial support, food, supplements, clothing, laughs, or hugs. He loves you so much, and so do we.

Mike’s current condition
Mike is in hospice care, which is being provided at his home in Rancho Cucamonga, east of Los Angeles in the Inland Empire.

He’s no longer able to walk or stand, and in the last month he’s become so weak that he’s now bedbound.
He can still talk, although his speech has become more difficult to understand, and speaking often causes him to be winded.

With his breathing muscles compromised, Mike often finds himself short of breath even lying down (oxygen isn’t advised for someone with ALS since exhalation is equally weak and carbon dioxide can build up to dangerous levels in the bloodstream).

He’s in constant pain as his remaining muscles continue to shrink, tearing and pulling on the joints. Hospice is trying to help manage the pain, but it's been a challenge, as are the side effects of being on pain meds.

Eating has become more difficult because of extreme fatigue and more difficulty chewing and swallowing. He’s in constant danger of choking on food, water, saliva, and phlegm (the suction machine has saved his life more than a few times).

I could write 10 pages about the suffering Mike and others with ALS endure every day, what that looks like. Unless you’ve seen this disease up close you have no idea of the breadth and depth of misery this beast causes.

Because of this lack of awareness, ALS is overlooked and research severely underfunded. If you get an ALS diagnosis, you have no options; they can only chart your demise and try to manage your symptoms. See What You Can Do below if you’d like to help.

Stem cell treatment
It’s hard to believe it’s been over a year since Mike entered the BrainStorm clinical trial at Cedars-Sinai hospital in Los Angeles. After receiving three injections into his spinal cord fluid plus three follow-up lumbar punctures, Mike finished the trial in May.

We have no way of knowing for sure whether he received the active stem cell treatment or placebo — BrainStorm can’t unmask the trial for another year.

I believe that he did get the real thing; after each of the three treatments his breathing and speech improved slightly, which doesn’t usually happen with ALS. It wasn’t the functional return Mike had been hoping for (perhaps not enough of his stem cells were extracted or the freezing process damaged them), but I truly believe that it bought him some time, and for that I’m very grateful.

Mike wanted to finish the NurOwn injections before going to South Korea for the Corestem treatment. We stayed in contact with the Corestem team in Seoul throughout the trial and reserved tentative treatment dates.

Unfortunately, by the time Mike completed his third NurOwn treatment and we could nail down a firm date to go to South Korea, his breathing was too compromised to be able to safely undergo the procedures and make the three trips overseas.

How you’ve helped
The funds you’ve given with your generous hearts have helped more than we could ever put into words. Here are just some of the ways you’ve contributed to important ALS research and helped ease the burden on Mike and his family:

• Travel expenses. Though there’s no charge to participate in a clinical trial, Mike incurred several thousand dollars in expenses just traveling to and from the many appointments and hospital admissions at Cedars-Sinai. You helped Mike complete the NurOwn trial and that is a very big deal — BrainStorm is having trouble recruiting the 200 participants they need, and it can't apply for FDA approval of NurOwn until the trial is complete.

• Supplements and off-label medication. Mike, as a science-minded person, has researched and tried a litany of alternative treatments that have some sort of evidence behind them, even if only anecdotal, of helping others with their symptoms or rate of progression. He’s tried curcumin, CoQ10, cordyceps, magnesium, lithium orate, various amino acids, coconut oil, spirulina, CBD oil, the Deanna Protocol, Protandim, lunasin, and Chinese herbs, among others. Many of these can be costly.
He’s also tried off-label use of ropinirole (a drug prescribed for restless legs syndrome and Parkinson’s) and ibudilast (used for asthma, stroke, and multiple sclerosis, which we have to order from Japan).

• Apartment: Mike had to rent an accessible home base in Southern California with space for visitors and all the medical equipment he needs, which has added quite a large and unexpected sum to his budget.

• Extra caregiving assistance. The VA only covers a certain number of hours of home health aides, and it doesn't cover overnights, so Mike has paid out of pocket to help us with his round-the-clock care.

• Funeral arrangements. This is a tough one. Mike has already made his final arrangements with a local funeral home (the VA doesn’t cover much of this since he’s opting for cremation in the Buddhist tradition). He didn’t want his family to worry about the details or cost when the time comes.

This continues to be a very difficult and heart-wrenching road. Mike has been braver than I can imagine anyone else could be in the face of this, and he still manages to make us laugh every day, but he is suffering. Knowing you all care so much about him (many of you have never even met him) means everything.

He really appreciates any additional messages of love and reminders of the good times you’ve had with him or how he may have helped you and others over the years.

“Thank you” could never begin to express our gratitude to you, but, truly, thank you from the bottom of our hearts.

Holly & Sheila

What you can do
Eighty years ago this week, Lou Gehrig gave his famous farewell speech at Yankee Stadium, and he died of ALS less than two years later. In eighty years, not much has changed for people diagnosed with ALS.

ALS is extremely overlooked and underfunded. Before this, not one person that I’ve spoken to understood how horrible this disease really is and that it’s 100% fatal.

ALS is on the rise and it does not discriminate. There may be hope on the horizon, but the current laws and funding aren’t helpful for those with ALS. You can help: see below and talk to others about ALS. Thank you!

Die Trying: VICE on HBO: https://www.youtube.com/watch?v=arDpeOm2s_4&t=1234s

I Am ALS, a new action-oriented nonprofit https://iamals.org/

ALS Therapy Development Institute (ALSTDI), a biotech nonprofit focused solely on ALS: https://www.als.net/

Rahul Desikan/Laboratory for Precision Neuroimaging at UCSF: Dr. Desikan has been studying neurodegenerative diseases and was himself diagnosed with ALS two years ago. As his clock runs out, his team is doing some of the most groundbreaking work out there today.

Roasting for Research: Supporting ALS research can be as easy as buying yourself some delicious coffee!
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Hi everyone. This is long overdue but Sheila and I wanted to quickly update you all on what's been happening since we started this campaign.

First, we can’t say enough how deeply grateful we are to all of you for your financial and moral support, your prayers and good wishes for Mike. You're making it possible for Mike and us to have some hope when this disease usually affords none. It means everything that you're with Mike in this.

Second, a spot of good news: After a very difficult delay, Mike was officially admitted into the BrainStorm clinical trial. On October 9 he had the procedure to extract his bone marrow so they can harvest his stem cells. We’re thankful and cautiously optimistic that he’ll get the real stuff and not placebo and that the three infusions will do something really positive for him.

Given the 50/50 chance of placebo and the temporary effect of the treatment itself, we’re moving forward with plans to go to Korea for Corestem’s Neuronata-R stem cell treatment, which is conducted at Hanyang University Medical Center. They’re at capacity for the next few months — it's the only treatment of its kind in the world with proven results that's available commercially, so people suffering from ALS are flocking there. We know some people who finished the BrainStorm trial but received placebo who are also fundraising for Korea. So we’re trying to secure a place in line now.

Corestem has confirmed that the cost of one round of treatment (three admissions over the course of two months) will be $100,000, not including travel expenses. They require $40,000 up front.

As I write this, thanks to all of you, donations so far have totaled $21,000. Thank you thank you thank you!! Some of you are making repeated donations, once a month or just whenever you can, which is a great idea for those of us who don’t have a pile of cash sitting around. Many many thanks to you guys.

We really need to keep the momentum going, so any additional help you can provide in the form of dollars or spreading the word is so valuable.

We'd like to try to secure some media coverage given that Mike is a veteran and his story is so compelling. Local coverage would be great, and national coverage would really do wonders — Ellen DeGeneres, This Is Life With Lisa Ling, VICE on HBO, or another talk show or news program. If anyone has any ideas or media connections, please message me, Sheila, or Mike.

***Update on Mike’s condition***

Mike is determined to walk in unassisted, on his own two feet, to his first infusion of the trial on November 13. I know he will do it. Although his legs are getting weaker, his muscles are shrinking, and he’s exhausted most of the time, never underestimate a determined Mikey.

His blood pressure has been high so he’s starting meds for that. His pulse is often really high too. We think it might be related to his breathing issues.

Eating continues to be a challenge. The one ALS medication he takes (riluzole) is known to zap the appetite, chewing is becoming increasingly tiring, and swallowing requires more effort so the food he eats can't be dry, tough, or chewy. We're thankful he's still able to eat on his own, but eating is even more of a joyless, exhausting chore for him than it was a couple months ago.

His speech is changing. His upper lip feels stiff and he notices a lisp when he speaks now. When he's tired his voice gets raspy. It's all part of this evil illness that takes something new from him every day.

***Send love when you can***

Mike puts on a brave face, but everything is getting more difficult. The psychological and emotional toll this disease takes on a person is monumental. It means everything right now for him to hear from people he loves, even just a quick check-in call or a message of encouragement.

Don’t worry if you don’t know what to say…none of us does (including me). What matters is that he knows you're with him and feels your love and support.

Every day is heavy, but laughter helps lighten things up and is truly medicine for Mike. Good jokes, goofy pet videos, and funny stories are welcome!

Even though it's hard for him to text a lot, and long conversations can be exhausting, he really appreciates hearing from you, so please don't let that get in the way of reaching out to him. :)

Thank you!

With so much love and gratitude,

Holly & Sheila
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Hi everyone, it’s me, Mike. Here's me "before the fall" and "after."

I’m sorry, it’s not easy for me to communicate by text or typing on the computer very often, but I want to say "thank you" and tell you all that I’m deeply moved by all the love and care I’ve received in the form of kind words of hope and inspiration, not to mention the unbelievably generous donations I’ve received from people I know and love, as well as from those of you I’ve never met and now love, too.

I’d also like to thank all of you for the prayers and well wishes that flooded in when I fell on my face last month. I’ve almost recovered, but because my ALS symptoms are still progressing, I probably won’t get back to where I was before the fall, at least not anytime soon without stem cells, but I’ll keep giving it my all.

This road has been unbelievably difficult, and the fall really set me back, but I’m so indebted to you for your compassion and support. Please accept my sincere thanks from the depths of my wounded heart and soul.

There is still hope for me, but I really need your help. Please stay with me. If you’ve already donated, please help me share this with as many people as you can.

Wouldn’t it be great if I ended up on the cover of Time magazine with a handful of others who beat this with me? Ultimately, I would like to be able to volunteer again, see my youngest nephew grow up, care for my aging mom, essentially have more time with my entire family. I want to be able to continue just being the best man I can be.

I, my family, and my loved ones are so grateful to you. Thank you so much!

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$28,590 of $250,000 goal

Raised by 194 people in 11 months
No Longer Accepting Donations
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Created August 19, 2018
Holly Cooper
on behalf of Phoenix Michael Thomson
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