A Chance for Texans to Help Texans in November

[OlDawg]

A measure will come before voters on the November ballot to create a research fund and institute for Parkinson’s, Altzheimers, Dementia & related nuerodegenerative diseases. The administrative costs have been capped at 5% by the approved legislation. So, 95% will go to research funding. The amount set aside right now is $3 Billion over 10 years.

Please read the attached link from the Michael J. Fox Foundation & remember, consider, and pass along this information to your friends, co-workers and families.

Thanks in advance.

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[OlDawg]

Full disclosure:

My better half has given me permission to sign up as a policy advocate and use her story to speak and meet with others and legislators/policy makers about the need for research. So, I may occasionally make postings related to these issues.

I’ll keep them brief when I post.

[Eagle11]

Thank you OlDawg.

I think this is way overdue. My mom has dementia and it is horrible to watch. 

I like the cap on the infrastructure spending at 5%. Let the money get to where it needs to be, not in CEO's and politicians bank accounts.

[thetragichippy]

1 hour ago, OlDawg said:

Full disclosure:

My better half has given me permission to sign up as a policy advocate and use her story to speak and meet with others and legislators/policy makers about the need for research. So, I may occasionally make postings related to these issues.

I’ll keep them brief when I post.

My Mother passed from that disease, but lived with it for over 10 years, and my Father took care of her to the very end. As Eagle11 said, it is horrible to watch and really claims 2 lives if married. 

[SmashMouth]

It's a VERY worthy cause for a horribly debilitating disease. It took my Father in law 2 years ago after about 5 years of pain and suffering for the whole family.

I said that to say this:

It's a $3 billion initial cost from the Texas General Revenue Fund, PLUS $300 million in annual grants for the next 10 years or so unless it gets renewed. It also competes with priorities like education (has anyone heard of the new voucher handout, btw), and infrastructure. Mostly it is taking OUR tax dollars - a lot of them - to handle what is already being handled by the private sector. Texas is already home to world-class research institutions and medical centers, funded through private investment, universities, nonprofits and the like. But God love 'em - politicians including so-called "fiscal conservatives" can't help but stick their noses and OUR money where it doesn't belong.

No matter how worthy the cause is, I'm not in favor of this bill. Let the research happen without government overreach.

[OlDawg]

6 hours ago, SmashMouth said:

It's a VERY worthy cause for a horribly debilitating disease. It took my Father in law 2 years ago after about 5 years of pain and suffering for the whole family.

I said that to say this:

It's a $3 billion initial cost from the Texas General Revenue Fund, PLUS $300 million in annual grants for the next 10 years or so unless it gets renewed. It also competes with priorities like education (has anyone heard of the new voucher handout, btw), and infrastructure. Mostly it is taking OUR tax dollars - a lot of them - to handle what is already being handled by the private sector. Texas is already home to world-class research institutions and medical centers, funded through private investment, universities, nonprofits and the like. But God love 'em - politicians including so-called "fiscal conservatives" can't help but stick their noses and OUR money where it doesn't belong.

No matter how worthy the cause is, I'm not in favor of this bill. Let the research happen without government overreach.

That’s an understandable response. I’m not posting to advocate for the Amendment. Only to tell my wife’s story if asked, and to let people know the Amendment will be on the ballot. It will be up to the voters as it should.

I only found out about the legislation from an email today. So, I haven’t read it yet. Only the email I attached, and a few news blurbs later today.

I will point out that the government spends over $10 billion/year for cancer research, and treatments are coming quicker than ever with AI. Universities do not research without grants & they charge an average overhead of 30%. Perhaps the authors thought the taxpayers would get more bang for their buck with a mandated 5% cap if they were going to fund research studies anyway. Attract some of the talent away from other places (Texas Universities —where our tax dollars already go—and elsewhere). I don’t know. None of this will probably be in time for my wife of 36–almost 37–years.

I will say this:

My tax dollars are spent to provide family restrooms at SOME Texas restaurants stops. I never really thought they were necessary, or even thought much about them at all, because the men’s and women’s restrooms had changing boards. Then, my wife was diagnosed with corticobasal degeneration—which is a very cruel combination of Altzheimers, Palsy, and Parkinson’s. When she became unable to use her entire right side, unable to dress, eat, speak clearly, brush her teeth or hair, bathe, walk, sit, stand, or use the bathroom by herself, I realized that I had never thought about our aging population, and the number of people with dementia and/or Altzheimer’s that have to have assistance in the restroom. I’ve also seen more and more disabled vets who require assistance. Handicap facilities do not help these folks.

There are far too few family restrooms, and—like handicap parking—someone is always using them who has no need.

I have found that most men are generally okay with me bringing her into the men’s room if I holler at them first. The women don’t allow me to come in with her at all, and they don’t usually volunteer to help. So, she comes in with me.

Just one of the things we have to plan for when I take her to DFW area to see our grandkids—who don’t understand what’s wrong with Nanny.

The private sector will only fund research when they can make a profit. Big Pharma will always be Big Pharma. The Texas Medical Center is focused on diagnosis & treatment. Not research.

[OlDawg]

I wasn’t aware of this. But, the research center idea came from Texas creating a similar center for research into cancer. Interesting read of the back story.

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[SmashMouth]

8 hours ago, OlDawg said:

That’s an understandable response. I’m not posting to advocate for the Amendment. Only to tell my wife’s story if asked, and to let people know the Amendment will be on the ballot. It will be up to the voters as it should.

I only found out about the legislation from an email today. So, I haven’t read it yet. Only the email I attached, and a few news blurbs later today.

I will point out that the government spends over $10 billion/year for cancer research, and treatments are coming quicker than ever with AI. Universities do not research without grants & they charge an average overhead of 30%. Perhaps the authors thought the taxpayers would get more bang for their buck with a mandated 5% cap if they were going to fund research studies anyway. Attract some of the talent away from other places (Texas Universities —where our tax dollars already go—and elsewhere). I don’t know. None of this will probably be in time for my wife of 36–almost 37–years.

I will say this:

My tax dollars are spent to provide family restrooms at SOME Texas restaurants stops. I never really thought they were necessary, or even thought much about them at all, because the men’s and women’s restrooms had changing boards. Then, my wife was diagnosed with corticobasal degeneration—which is a very cruel combination of Altzheimers, Palsy, and Parkinson’s. When she became unable to use her entire right side, unable to dress, eat, speak clearly, brush her teeth or hair, bathe, walk, sit, stand, or use the bathroom by herself, I realized that I had never thought about our aging population, and the number of people with dementia and/or Altzheimer’s that have to have assistance in the restroom. I’ve also seen more and more disabled vets who require assistance. Handicap facilities do not help these folks.

There are far too few family restrooms, and—like handicap parking—someone is always using them who has no need.

I have found that most men are generally okay with me bringing her into the men’s room if I holler at them first. The women don’t allow me to come in with her at all, and they don’t usually volunteer to help. So, she comes in with me.

Just one of the things we have to plan for when I take her to DFW area to see our grandkids—who don’t understand what’s wrong with Nanny.

The private sector will only fund research when they can make a profit. Big Pharma will always be Big Pharma. The Texas Medical Center is focused on diagnosis & treatment. Not research.

My sincere prayers for your wife, your family and you. I have seen the devastation to the individual and the families these diseases bring, though not nearly as closely as you. I’m sorry for that.
 

I don’t trust our government to do the right thing most of the time. Especially when it comes to spending money. Nor do I trust politicians as a whole. Especially when it comes to finding a way to line their pockets with our money. This is more big government and bureaucracy in the making. I hope when it passes, and it will, that at least some good comes from it. 

[OlDawg]

5 hours ago, SmashMouth said:

My sincere prayers for your wife, your family and you. I have seen the devastation to the individual and the families these diseases bring, though not nearly as closely as you. I’m sorry for that.
 

I don’t trust our government to do the right thing most of the time. Especially when it comes to spending money. Nor do I trust politicians as a whole. Especially when it comes to finding a way to line their pockets with our money. This is more big government and bureaucracy in the making. I hope when it passes, and it will, that at least some good comes from it. 

Thanks for your kind thoughts! We are one of the most positive, laughing couples you’ll find. We make it a point to have a big hearty laugh at least 17 times a day. Why that number? No idea. I think I read it keeps you healthier somewhere at some time. She rarely gets frustrated. Usually, it’s when I can’t understand what she’s trying to tell me. She cries a little then, but I tell her it’s not her. It’s my bad ears, and we laugh about it.

As far as the Research Center, I found some info on the Cancer Center this will be modeled after.

I’m a limited government guy also. At the least, a more local control government person. This appears to be more of an ‘investment in the future’ type of hybrid initiative set up as a pseudo government sanctioned entity. I would describe as similar to the PUC I guess. Somewhat independent. But, Board members appointed by the Governor. Every grant has to be peer approved by medical experts.

Attached is the latest report in PowerPoint easy to read slide form. Surprised I didn’t remember anything about it. If the Neurological effort is passed & set up similar, hopefully it can be just as successful. According to this report, it actually generates over $2 Billion/yr. in tax revenue for Texas, and still is able to be the 2nd largest grant funded initiative in the world. Pretty impressive for Texas.

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[OlDawg]

For those curious what corticobasal degeneration is, the below link is fairly easy to read. It affects around 2,000-3,000 people per year in the U.S., so it’s one of the rare ‘Parkinsonism’ diseases. It’s typically called a Parkinson’s Plus disease. Not much is known about it at this time, and research has been very limited. We’ve been told by the Head of the Neurological Dept. at Houston Methodist (who provided our 2nd opinion after a barrage of all kinds of tests), that Big Pharma hasn’t concentrated any effort on it because there’s not enough of a potential revenue base. But, since it has some similarities to Alzheimer’s, dementia, & Parkinson’s, a new offshoot treatment—if discovered—for one of those conditions might help.

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[Big girl]

5 hours ago, OlDawg said:

Thanks for your kind thoughts! We are one of the most positive, laughing couples you’ll find. We make it a point to have a big hearty laugh at least 17 times a day. Why that number? No idea. I think I read it keeps you healthier somewhere at some time. She rarely gets frustrated. Usually, it’s when I can’t understand what she’s trying to tell me. She cries a little then, but I tell her it’s not her. It’s my bad ears, and we laugh about it.

As far as the Research Center, I found some info on the Cancer Center this will be modeled after.

I’m a limited government guy also. At the least, a more local control government person. This appears to be more of an ‘investment in the future’ type of hybrid initiative set up as a pseudo government sanctioned entity. I would describe as similar to the PUC I guess. Somewhat independent. But, Board members appointed by the Governor. Every grant has to be peer approved by medical experts.

Attached is the latest report in PowerPoint easy to read slide form. Surprised I didn’t remember anything about it. If the Neurological effort is passed & set up similar, hopefully it can be just as successful. According to this report, it actually generates over $2 Billion/yr. in tax revenue for Texas, and still is able to be the 2nd largest grant funded initiative in the world. Pretty impressive for Texas.

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My dad died in Jan 2025 from dementia related complications which were caused by hydrocephalus (fluid on brain) rather than.Altzheimers. He was misdiagnosed for  8 years, and i kept telling the docs that his decline was to rapid to be caused by Altzheimers ,so more research is definitely needed. A VP shunt would've saved his life if they would've properly dx him