Thurman is determined, so say YES to Sinking ALS

What we have here is a tale of The One That Got Away.    (That would be the original $100,000 custom designed Bass Boat that was promised to Thurman.....man with ALS).  

I align it in my mind with a Make a Wish Foundation type of situation.  Only, in this situation, Thurman’s wish was for ALL of us living the nightmare of ALS, to finally have hope via NUROWN.   

Back to Make a Wish: Let’s pretend you have a terminal disease.   Besides actually “SURVIVING” the disease, you have one wish in your head.  A trip, a tangible item...whatever it may be.  Disneyland? You find out that your dream is coming true!   Your intentions are pure, because your wish leads to hope for so many.   So...You arrive at Disneyland and Mickey slams the door in your face.  That’s what happened. 

Did Thurman cry? Get mad? Freak out?  Nope.  He just kept his country cool and chalked it up to another time that life has taken a s*** in his path.     I had to PULL the story from him. He wasn’t even going to tell me 

ANYWAY- He hasn’t given up. I haven’t given up. So....I’m asking you in this one final attempt to HELP THURMAN SINK ALS, ONE BASS AT A TIME. 

He has found an amazing deal on a boat that would qualify for the tournaments that he wants to join. **notice the $$ Goal is lower and certainly obtainable!**  

Read the entire novel below if you want...but know this:    THURMAN IN THIS BOAT = EXPOSURE FOR ALL OF US FIGHTING FOR NUROWN.     We deserve a chance at life.  

This is a long shot, but when you are facing what we are facing- you have TWO choices with your life:

Cut bait............

Or.....

FISH ON!!!!!!    I CHOSE TO FISH-ON.  Are you with me??  Are you onboard?  Are we in the same boat??

Ps-

*Thurman has a non-profit, so your donation could be a write off!   If you have $5, $10, $20 that you were going to spend on a Jamba Juice or a 5th of Southern Comfort or a 40 of Old E......just today....this one time...put that cash in this donation dish, fulfill a wish and watch Thurman fish!!

-Jamie

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Sometimes a grand-plan just doesn’t work out.  When that happens, do you throw in the towel? I hope not. 

I understand that nobody likes a bait and switch. No pun intended…

I am posting this for the specific reason of clarifying that there was no bait and switch involved with this fundraiser. 

The goal was to buy Thurman the bass boat, to get Thurman in the publication, at which point-Thurman would mention NurOwn and bring awareness to what happened to all of us in the ALS world (via the bass boat). 

We did not make the April 10th deadline, but it does not mean that he does not have an opportunity in the future. 

For the time being I have no problem leaving the GFM up, thus allowing people to donate as they wish. 

On the flip side, there may be some people who donated to “the cause” in hopes of the bass boat scenario working out.  

Thurman contacted me yesterday saying he thanks me for trying so hard to help him ...but “what does he do with the donations, since it won’t buy the boat?”  

In my head I’m thinking “Is there even a question?? People donated because they like you.”  Sure many were throwing the Hail Mary, hoping that the bass boat- magazine- NurOwn scenario worked out...but we all knew it was a long shot. Granted, achieving our goal would be awesome- but either way: a man with a terminal disease should be living his best life and enjoying family-time as much as possible. 

If all of our donations make his life a little bit easier, at least we all did a little bit of something for someone else.  Kindness and paying it forward is what makes the world go ‘round.  

My guess is that you donated because you saw the greater good in “The Plan”, you care about Thurman and/or you care about me. (All of the above?)

Thurman did not ask for this GFM.   He called me yesterday about “what to do with the money, since the boat didn’t work out”.   If he was in front of me, I probably would’ve punched him in the mouth and said “Are you kidding?!” (But if I try and punch somebody, I fall down ....so I don’t think that would work out for any of us.) 

There are future opportunities for him to be featured in the publication and maybe putting “The Plan” back into action. Or....maybe the money will go towards his medical costs. I know that right now I’m paying an extra $12,000 a month on top of my regular bills to afford my treatments ...so knowing what I know about myself, I would appreciate any money that was donated....so I’m certain he does as well.  Every dollar counts in this fight.   In fact, I have a real example: My GFM kicked butt, right off the line.  However, as time goes on- you are forgotten. Out of site out of mind?  Most of the money is gone.  I had a surge a few weeks ago, but besides that- nobody thinks about you...and honestly, I don’t expect anyone to do so.  HOWEVER, when the occasional $50-$200 rolls in now and then, I feel really happy.  (Not because of the $). 

Thurman deserves to feel happy. 

Thurman is very humble and earns his own.  That’s just the way WE are. I’m exactly the same way. I’ve never asked anybody for anything. (WE = raised ‘Country’).  I guaran-flippin-tee you that he is uncomfortable about the donations, because the boat didn’t happen. 

I think we can all agree that we don’t really care where the money goes, as long as it goes towards GOOD. 

With that being said,  I am going to leave the GFM up. Maybe enough $ will be raised, to fulfill the Bass boat mission.  If not, then I take great comfort in knowing that a very nice honest hard-working man will have a little bit of help from a lota bit of people, friends, family and strangers; to simply make his life a little bit better- because he deserves it.  

If you do not feel the same way and you would like your donation refunded, feel free to e-mail me: [email redacted]

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 *THIS IS A STORY ABOUT A MAN & A BOAT...and 2 friends united against 1 common enemy:  ALS* 

Thurman lives in West Virginia. I live in California.   Listening to us on the phone probably sounds comical.  He talks with a slow Southern drawl.  I talk 1000 miles an hour.  He says “Ma’am and Sir”.  I say, “Girlfriend and Dude”.  He puts “AHLL” in his truck.  I put “OIYILL” in my truck......  wait, did I say TRUCK?   We both drive trucks? Yes.  We both drive Trucks.

Sure, my Ford F-250 6.7 liter PowerStroke Diesel will SMOKE his Dodge Ram 2400 Diesel....but the fact remains: We live 2,000 miles apart and we have our own way of talking….but we are very much the same.  

We have both been with the love of our lives for over 20 years.   Our kid(s) are the super shiny bright stars in our world. We have deep, strong roots and family is first.  You do not have to be blood to be welcomed as family, we would both give the shirt off of our backs to help out a friend....We are good people. 

Good old fashioned values, we stand by our beliefs, we are both FIGHTERS….and we have ALS. 

Up until ALS came crashing down on my world and swallowed it whole, I had never asked for anything from anyone.   Jason and I make our own, we have lived on our own since we were teenagers and I do not expect anything from anyone.   It has taken every ounce of me to swallow my pride and ask for help from people.  I did not ask for a GoFundMe and I felt embarrassed by it. However, once you realize you are about to “exit-stage-left”, FOR GOOD, you forget about that pride….and you are grateful for help.    

With that being said, I might end up losing my friend for doing this…. but I can NOT ignore a friend, when a friend needs a hand.   (for the record, Thurman would never ask for a hand)    I also can NOT let this opportunity slip away from US. An opportunity that might be the catalyst that puts NurOwn into our bodies ...before it’s too late.

Here is the bottom line:   I am trying to raise $50,000 in about a week. Call me crazy….but I refuse to give up.

We with ALS are desperate for major exposure to the tragedy that occurred when NurOwn was shot down in February.  I can fight all I want...but I was not in the trial. Media outlets do not care to hear another person with ALS begging for NurOwn.  They hear what they want to hear.  They hear that it failed.   Period.   

Unlike me, Thurman, was in the trial.  “The proof is in the pudding”, right? Yep. It sure is. 

Pre-NurOwn Clinical Trial, Thurman went for a walk on the beach (by the hospital) and collapsed in the sand.  Fast forward: Post NurOwn Clinical Trial, Thurman walked 6 miles up and down the same beach without a problem.  Post NurOwn Trial, the hospital confirmed that his “ALS breathing score” increased by almost 25%!

 Thurman has a voice that “matters” to the world because he IS the pudding.   He is the walking, talking, breathing, FISHING, real-world-data that the world needs to see and hear from. 

 Thurman has the door cracked open for him to be featured in Bassmaster magazine.   They have 4.5 million subscribers.   Their articles are typically about “A guy, his boat, his love for fishing and his story”.  Thurman needed a boat and he needed to get into one of the big tournaments. 

He was backed by an organization that was purchasing a custom bass boat for him. He agreed to donate any winnings back to the organization. He went to pick up the boat. BassMaster magazine was there for the “unveiling”. A journalist, photographers, ready to document his journey and print the much-needed article.    An article that talks about a man who could not fish, because ALS had taken away his grip, who was in the NurOwn Clinical Trial and can now grip the rod and reel in the big one. 

 On THAT day, the organization backed out.   Can you imagine how that must have felt?   To have ALS is terrible...but that just adds a little bit of salt in a fresh wound. Actually, a lot of salt. 

Yes, the boat was awesome- so not picking it up was awful. However, the bigger picture is the fact that the story was crushed.   Crushed for all of us with ALS.... or is it??

 We NEED America to hear us.   We NEED America to help us end the suffering.   We need to get Thurman in a bass boat!! 

I can hear questions like “Why can’t he borrow a boat?”  “Why is the boat $25k?”    It was NOT $25k…..it was, in fact, $100K…but that ship has sailed.

 Thurman spoke with a local boat dealer that will work with him, but he needs to come up with 25k to make this all happen.

 You might read this and think “Jamie is crazy, she’s trying to raise money for some dude to fish”.   

Yes and No.

 Give a man a fish and he eats for a day, right?    Give a man a boat and he fishes for his LIFE and the LIVES of every single one of us dying from this terrible disease.

 Donations = Bass Boat.   Bass Boat = Thurman in Tournaments.    Thurman in Tournaments =  BassMaster Magazine printing his story.     BassMaster Magazine printing the story = 4.5 million American’s fully aware of what just happened to the ALS community……….and then MAYBE …….just MAYBE….. the right person will read the story and get hooked on helping us live the lives we were meant to live.

 We need hope and we need your help.

 (Why one week?   Because the tournament is in a week and I only just heard about what happened to Thurman, so of course….I am trying to make it happen….Captain)

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100% of this fundraiser is for Thurman’s journey/plan to put a massive spotlight on NurOwn & the tragedy that occurred on 2/22/2021 in the ALS world.  please read and try to see the bigger picture. 

I was diagnosed with ALS 260 days ago. (It feels like a lifetime) I came home, I cried a little and then I started searching for answers.  I came across the story of Thurman Maynard, done by ABC Nightly news.  I saw a guy who was in the NurOwn Clinical Trial for ALS.  ALS had robbed him of the ability to ride his dirt bike.  (The story was done after the NurOwn Clinical Trial).  I saw him get on his dirt bike and ride it again.   I saw his wife Amanda cry.   I cried.   I felt like I knew him because I like to ride dirt bikes.   I wanted to know how he got this cool thing called “NurOwn”, so I messaged him on Facebook.  He replied to me right away.   

The words that we exchanged changed my mood and literally jump-started my “FIGHT” instinct.  I have made it clear, I am a fighter, but at my darkest hour, “fight” seemed impossible. Thurman gave me that extra shove that I needed. A good old down to Earth “Get back on the horse-Handle it-Treat each day as one and keep fighting-Don’t give up-PUSH. 

For THAT, I thank Thurman from the bottom of my heart.