Prayers Needed

[SassyLady]

Going to Chicago from 24-3rd. Lots of stuff. Jay Posted this on FB today:

Prayers for your family Kath.

[actsnoblemartin]

My deepest prayers, simpathies, and virtual hugs if youll accept

love you my friend

[Kathianne]

The visit back when was very good. All the kids were able to reconnect and there will be no more, 'We'll get together soon? Cousin party over holidays.' Last weekend my brother came up to help with jay's move to a ranch home. My boys showed up, along with Jay's bro-in-law from WI. Then 6 of my brother's old friends from police time and a few of their sons. 25 of Jay's friends showed up too. LOL! They had inside and outside help. It was raining, so I guess some worked at gathering food and drinks for everyone. He's a lucky guy, so many who care.

My SIL is going to spend the summer with Jay and his boys, my brother will come for colder weather. It's not so much that Jay needs 24 care yet, but they want to make sure they are doing all they can to stay on top of the situation and ease things for their grandsons, who've chosen to stay with Jay, though the move means they need to change schools, though same district. One entering high school, one 5th grade.

Since my visit, my niece set up a trip to Dubai, where Jay's buddy from college leads an NCIS team. They had a wonderful time. At the end of April, same niece popped for sibling trip to London for long weekend-just the 3 of them.

Jay tells me that some of his symptoms seem to be worsening, but overall he's still doing 'OK.'

We're all trying to find out more about this horrible disease, a great feature video came out on Prime Video the other day:

https://www.amazon.com/Love-Life-No-...o%2C135&sr=1-1

Very inspiring and informative.

[Gunny]

The visit back when was very good. All the kids were able to reconnect and there will be no more, 'We'll get together soon? Cousin party over holidays.' Last weekend my brother came up to help with jay's move to a ranch home. My boys showed up, along with Jay's bro-in-law from WI. Then 6 of my brother's old friends from police time and a few of their sons. 25 of Jay's friends showed up too. LOL! They had inside and outside help. It was raining, so I guess some worked at gathering food and drinks for everyone. He's a lucky guy, so many who care.

My SIL is going to spend the summer with Jay and his boys, my brother will come for colder weather. It's not so much that Jay needs 24 care yet, but they want to make sure they are doing all they can to stay on top of the situation and ease things for their grandsons, who've chosen to stay with Jay, though the move means they need to change schools, though same district. One entering high school, one 5th grade.

Since my visit, my niece set up a trip to Dubai, where Jay's buddy from college leads an NCIS team. They had a wonderful time. At the end of April, same niece popped for sibling trip to London for long weekend-just the 3 of them.

Jay tells me that some of his symptoms seem to be worsening, but overall he's still doing 'OK.'

We're all trying to find out more about this horrible disease, a great feature video came out on Prime Video the other day:

https://www.amazon.com/Love-Life-No-...o%2C135&sr=1-1

Very inspiring and informative.

Very fortunate to have such close family and friends to support. My once-tight-knit family (2 generations back) has scattered with the winds and hear from some of them shen they want something. Progress and change.

Diseases like ALS are a reason why I can't throw the baby out with the bathwater every time scientists get nailed flubbing research. Without them there is no hope for a cure.

Best to you and your family

[Kathianne]

Very fortunate to have such close family and friends to support. My once-tight-knit family (2 generations back) has scattered with the winds and hear from some of them shen they want something. Progress and change.

Diseases like ALS are a reason why I can't throw the baby out with the bathwater every time scientists get nailed flubbing research. Without them there is no hope for a cure.

Best to you and your family

I agree. It's the same with all professions. Most go into medicine related, teaching, policing, law, ministries, etc. to help people. Most work with just that attitude. It's the bad ones that make the headlines, cause loss of trust. Without those who do the work, where would we be?

One of the things brought up in the movie is that until the monies came in from 'ice bucket challenge,' there were NO meds that Dr could offer after diagnosis. That was $100 million raised from 2011-2016! Of those participating only about 15% knew that ALS was the group money was being raised for!

The young man afflicted with ALS in 2017 was an asst. US atty. He met his wife working on Obama campaign-yeah, I KNOW! LOL! Still, he was 37 years old and received the diagnosis on the day he returned with baby daughter from the hospital. They also had a 2 year old girl.

He found that drs weren't exactly helpful, indeed pretty much were like, "There's NOTHING to be done, get your affairs in order, you have 6 months." Luckily for those that followed, the two of them had connections-pretty good ones. Bottom line they found while there was a national organization-Drs are not comfortable with patients they have no treatment-even something that alleviates symptoms some. That diseases that are rare and fatal, it's pretty hard to raise money and families tended to just focus on their loved one and then grieve.

Well they did find that the $100million from the ice bucket challenge did lead to 2 new meds that had been years in trials and going through protocols. With the money, they got them through. Knowing that if $100 million could do that over the course of 7 or 8 years, what could more on a steady, reliable basis do? They turned to the government-which they knew and had connections that knew more-including lobbying and legislative process for funding.

Even with powerful connections, it's a massive task to start that process and Brian didn't have good health and has two small children. The movie shows some of those that helped, in public and behind the scenes-some also afflicted, some not. Right now ALS has made created connections with MDA, Alzheimer's, Parkinson's, and other neuro diseases. Connections have been made with DOD, with knowledge that those that have served have a double rate of being afflicted with ALS, they are not certain why, though both TBIs and exposure to chemicals are being researched. More was known about those other diseases and meds had already been created-again, more known and some had responses to alleviate and prolong life. Right now the two meds for ALS give an additional 2-5 months for some patients. But more are in the 'pipeline.'

That pipeline is something the I AM ALS organization is working on. How to get trials to allow the patients accepted into them, to keep taking when positive results, which approval process continues. Willing to take the risk.

Anyways, the movie is very motivating and just added to the fire already lit under Jay's friends and family.

[Kathianne]

I agree. It's the same with all professions. Most go into medicine related, teaching, policing, law, ministries, etc. to help people. Most work with just that attitude. It's the bad ones that make the headlines, cause loss of trust. Without those who do the work, where would we be?

One of the things brought up in the movie is that until the monies came in from 'ice bucket challenge,' there were NO meds that Dr could offer after diagnosis. That was $100 million raised from 2011-2016! Of those participating only about 15% knew that ALS was the group money was being raised for!

The young man afflicted with ALS in 2017 was an asst. US atty. He met his wife working on Obama campaign-yeah, I KNOW! LOL! Still, he was 37 years old and received the diagnosis on the day he returned with baby daughter from the hospital. They also had a 2 year old girl.

He found that drs weren't exactly helpful, indeed pretty much were like, "There's NOTHING to be done, get your affairs in order, you have 6 months." Luckily for those that followed, the two of them had connections-pretty good ones. Bottom line they found while there was a national organization-Drs are not comfortable with patients they have no treatment-even something that alleviates symptoms some. That diseases that are rare and fatal, it's pretty hard to raise money and families tended to just focus on their loved one and then grieve.

Well they did find that the $100million from the ice bucket challenge did lead to 2 new meds that had been years in trials and going through protocols. With the money, they got them through. Knowing that if $100 million could do that over the course of 7 or 8 years, what could more on a steady, reliable basis do? They turned to the government-which they knew and had connections that knew more-including lobbying and legislative process for funding.

Even with powerful connections, it's a massive task to start that process and Brian didn't have good health and has two small children. The movie shows some of those that helped, in public and behind the scenes-some also afflicted, some not. Right now ALS has made created connections with MDA, Alzheimer's, Parkinson's, and other neuro diseases. Connections have been made with DOD, with knowledge that those that have served have a double rate of being afflicted with ALS, they are not certain why, though both TBIs and exposure to chemicals are being researched. More was known about those other diseases and meds had already been created-again, more known and some had responses to alleviate and prolong life. Right now the two meds for ALS give an additional 2-5 months for some patients. But more are in the 'pipeline.'

That pipeline is something the I AM ALS organization is working on. How to get trials to allow the patients accepted into them, to keep taking when positive results, which approval process continues. Willing to take the risk.

Anyways, the movie is very motivating and just added to the fire already lit under Jay's friends and family.

After all that I failed to mention that today the federal government has funded annually over $500 million for ALS and other neuro based diseases. Some is through DOD and some is from alternative fed sources. That is way more research funding than $100M over 7 or 8 years. Though the next ice bucket challenges are set in all states. Aug 2 here in AZ will be in Scottsdale.

[Kathianne]

After all that I failed to mention that today the federal government has funded annually over $500 million for ALS and other neuro based diseases. Some is through DOD and some is from alternative fed sources. That is way more research funding than $100M over 7 or 8 years. Though the next ice bucket challenges are set in all states. Aug 2 here in AZ will be in Scottsdale.

One more, Lou Gehrig day is June 2 for MLB. I ordered a t-shirt!

https://www.iamals.org/lou-gehrig-day-2024/