Prayers Needed

[Kathianne]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.

[JohnDoe]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.

Jimminnee Cricket, what a week, Kathianne! :(

I am sorry to hear about your dad.... and now this with your nephew!

i will say a prayer for your nephew, let us know how the tests turn out...

did your brother return home?

[manu1959]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.

kath,

i am so sorry that life is heavy these days.......my thoughts and prayers are with you and your family....

59

[Kathianne]

kath,

i am so sorry that life is heavy these days.......my thoughts and prayers are with you and your family....

59

Thank you, tried to rep, but uh ya know. It is too weird how much 'heavy' stuff can hit at once. I'll let you know, when I do, but I"m praying like one possessed.

[manu1959]

Thank you, tried to rep, but uh ya know. It is too weird how much 'heavy' stuff can hit at once. I'll let you know, when I do, but I"m praying like one possessed.

24 is too young.....all the best to you and your family.....

the sun will shine again....

[stephanie]

You and your family will be in my prayer's Kat..

Stay strong my friend...though I know it might seem hard to do right now..

:huddle:

[nevadamedic]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.

Jesus............ Is it operable? Brain tumors arn't always as bad as people make out, Im sure he will be ok, well atleast I hope.

I know its a hard time but there is a reason for everything...............:salute:

[Mr. P]

kath,

i am so sorry that life is heavy these days.......my thoughts and prayers are with you and your family....

59

What he said...cept I donno what the "59" part is..

WE're with ya K, you know that.

[Pale Rider]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.



Footprints In The Sand

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,

“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”


--------------------------------------------------------------------------------

Mary Stevenson, 1936

http://www.wowzone.com/fprints.htm

[jimnyc]

Kathianne,

I'm sorry to hear about the loss of your father. Whether a child or a grown adult, I can't imagine losing a parent is ever easy. I hope you can find some solace knowing he lived such a long life. I think he's probably looking proudly down upon you right now knowing he raised such a kind and caring daughter.

[KarlMarx]

Psalm 23

1 The Lord is my shepherd; I shall not want.
2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

[CockySOB]

My thoughts and prayers are with you and your family, Kath.

[remie]

Kath

I lost my dad two years ago and while I think about him every day, now my thoughts are of his life and not his death. The saddness will pass with time and the shining moments you had with him will be forever in your memory. Hang in there and God bless you.

[Angel Heart]

HUGS I pray for all of you.

[Kathianne]

What he said...cept I donno what the "59" part is..

WE're with ya K, you know that.

Thank you, I tried to rep, but spreading thing, ya know. I've not a clue to '59 thing.

I spoke with my nephew today, the neurosurgeon is very optomistic that it's non-cancerous. That is the good news. The bad news is that it's big and rapidly growing.

Online I've learned they've come a long way in operating, laser is the deal and very successful. Prayers are requested. Thanks to all!

[Guernicaa]

Very sorry to hear that Kathianne.
It was very hard for my parents when my grandparents died.

I wish you and your family the best of luck in these hard times.

[Trigg]

I wanted to let you all know, my dad died last Friday. The services were Tuesday and the funeral yesterday. While his last week was very tough, he kept control until he slipped into a coma.

The services were beautiful, over 400 visitors. For a man 86 years old, no one could imagine the number of his friends that came from FL, AZ, IN, WI, and LA. Seriously, shocking and comforting. He impacted literally hundreds and hundreds of lives.

My brother and I sat down this morning, to start on the thank yous and get the estate in order. After about 1/2 hour, my sister-in-law called to tell my brother that their 24 year old son, due to marry Sept. 22, has a brain tumor. More MRI's and such being done today, please keep him in your prayers.

God moves in mysterious ways, I cannot imagine my father surviving this, even without the cancer. It was also weird that my son missed his train this morning, back to university, due to an error in train times posted, that lasted literally minutes before the correction.

My prayers are with you.

[Kathianne]

My prayers are with you.

Thank you. While I said 'today' it was actually yesterday. Pretty hard to contemplate your father's funeral, than a son or nephew finding out he has a brain tumor the next morning.

God was good, to spare my dad. The news thus far is mixed, but we are grateful for the good: So far the tests indicate it's not cancer. They also indicate that it's big and growing rapidly, that's the not good.

More info to come Tuesday, holiday ya know. Please say prayers!

[Joan]

Kathianne -

I did know about your Dad, but hadn't heard about your nephew. This is a shame! They say that God never give us more than we can carry, Hope that's true in this case! My prayers are with you!

[Sitarro]

Kath,

Having lost my father 4 years ago, I can say that what Remie wrote is very true. I think about him a lot, wonder what he would think of what I'm doing, how he would counsel me, and what a great example he was. Time does have a way of clearing away the sorrow and replacing it with the wonderful memories he was responsible for.

Best of luck to your nephew, I have faith things will work out well. Hang in there and it's OK to cry, that too has it's place. Your father will live on in his many accomplishments which of course includes you, I'm sure he was and is very proud......You are in my prayers.

[retiredman]

I just lost my dad in March, and the very week after, my lifelong bestfriend was diagnosed with anaplastic large cell lymphoma. I do not claim to know your pain, but I certainly know of it. You are in my thoughts and my prayers.

[musicman]

Please accept Starla's and my heartfelt condolences, Kathianne. I'm so terribly sorry. You and your family will definitely be in our prayers.

[Kathianne]

I knew this thread was around, I was hoping I wouldn't be needing it. For the past few weeks, been waiting to find out what's happening with Jay.

It's been a really hard 6 months, he found out his wife was cheating. He filed for divorce. She was fighting it, she wanted to keep everything the way it's been, but not change her behavior. (It must run in our family, it's pretty close to what ex kept saying, while he too fought divorce. Where do we find...) Anyways, that is life, so to speak.

Then about 3 months ago, he started feeling weird, tingling and weakness over left side. Much the same symptoms at beginning before brain tumor diagnosis. After several Loyola visits, about a month and half ago, back to Mayo in Rochester. Lots of tests, total consult for 10/19. My brother only told me after returning from the hospitalization a month + ago. I could tell he was more than a bit concerned, like I had to be the calm one, telling him to wait and see and pray. My brother is probably the most optimistic, but realistic person I know. I was worried. Talk to my nephew a few times, he sounded good, but also realistic. "I just want to know what, if anything can be done." Honestly, my family.

So yesterday was the day. I texted bro, 'thinking of you and praying.' A couple hours later he replied, 'supposed to talk to docs in hour or so...'

That was the last I heard, until an hour ago. I knew when no response, it wasn't going to be good.

ALS. Median time at his age, health issues, 2 years. God.

[Gunny]

I knew this thread was around, I was hoping I wouldn't be needing it. For the past few weeks, been waiting to find out what's happening with Jay.

It's been a really hard 6 months, he found out his wife was cheating. He filed for divorce. She was fighting it, she wanted to keep everything the way it's been, but not change her behavior. (It must run in our family, it's pretty close to what ex kept saying, while he too fought divorce. Where do we find...) Anyways, that is life, so to speak.

Then about 3 months ago, he started feeling weird, tingling and weakness over left side. Much the same symptoms at beginning before brain tumor diagnosis. After several Loyola visits, about a month and half ago, back to Mayo in Rochester. Lots of tests, total consult for 10/19. My brother only told me after returning from the hospitalization a month + ago. I could tell he was more than a bit concerned, like I had to be the calm one, telling him to wait and see and pray. My brother is probably the most optimistic, but realistic person I know. I was worried. Talk to my nephew a few times, he sounded good, but also realistic. "I just want to know what, if anything can be done." Honestly, my family.

So yesterday was the day. I texted bro, 'thinking of you and praying.' A couple hours later he replied, 'supposed to talk to docs in hour or so...'

That was the last I heard, until an hour ago. I knew when no response, it wasn't going to be good.

ALS. Median time at his age, health issues, 2 years. God.Very sorry to hear this. Thoughts and prayers are with you.

[revelarts]

I knew this thread was around, I was hoping I wouldn't be needing it. For the past few weeks, been waiting to find out what's happening with Jay.

It's been a really hard 6 months, he found out his wife was cheating. He filed for divorce. She was fighting it, she wanted to keep everything the way it's been, but not change her behavior. (It must run in our family, it's pretty close to what ex kept saying, while he too fought divorce. Where do we find...) Anyways, that is life, so to speak.

Then about 3 months ago, he started feeling weird, tingling and weakness over left side. Much the same symptoms at beginning before brain tumor diagnosis. After several Loyola visits, about a month and half ago, back to Mayo in Rochester. Lots of tests, total consult for 10/19. My brother only told me after returning from the hospitalization a month + ago. I could tell he was more than a bit concerned, like I had to be the calm one, telling him to wait and see and pray. My brother is probably the most optimistic, but realistic person I know. I was worried. Talk to my nephew a few times, he sounded good, but also realistic. "I just want to know what, if anything can be done." Honestly, my family.

So yesterday was the day. I texted bro, 'thinking of you and praying.' A couple hours later he replied, 'supposed to talk to docs in hour or so...'

That was the last I heard, until an hour ago. I knew when no response, it wasn't going to be good.

ALS. Median time at his age, health issues, 2 years. God.

God bless you and your family Kath.

[Kathianne]

God bless you and your family Kath.

I'm feeling angry and so sad. Want to be home, but brother is heading back to FL for 2 weeks until Jay has appt for what is to come at Rush, seems the 'best' for this in Chicago. Trying to keep mind off, then feeling guilty for trying not to feel. Arrgg!

[SassyLady]

I'm so sorry Kath.
Prayers for you and your family

🙏🙏

[jimnyc]

I knew this thread was around, I was hoping I wouldn't be needing it. For the past few weeks, been waiting to find out what's happening with Jay.

It's been a really hard 6 months, he found out his wife was cheating. He filed for divorce. She was fighting it, she wanted to keep everything the way it's been, but not change her behavior. (It must run in our family, it's pretty close to what ex kept saying, while he too fought divorce. Where do we find...) Anyways, that is life, so to speak.

Then about 3 months ago, he started feeling weird, tingling and weakness over left side. Much the same symptoms at beginning before brain tumor diagnosis. After several Loyola visits, about a month and half ago, back to Mayo in Rochester. Lots of tests, total consult for 10/19. My brother only told me after returning from the hospitalization a month + ago. I could tell he was more than a bit concerned, like I had to be the calm one, telling him to wait and see and pray. My brother is probably the most optimistic, but realistic person I know. I was worried. Talk to my nephew a few times, he sounded good, but also realistic. "I just want to know what, if anything can be done." Honestly, my family.

So yesterday was the day. I texted bro, 'thinking of you and praying.' A couple hours later he replied, 'supposed to talk to docs in hour or so...'

That was the last I heard, until an hour ago. I knew when no response, it wasn't going to be good.

ALS. Median time at his age, health issues, 2 years. God.

That's rough Kath. I'm sorry you are going through the hurt from this and the heartache. I can understand completely but that doesn't help the heart when it aches. Ever need to speak with anyone, and while you likely have many ears just know that I am here. I always listen via messages here and would give you my number if you ever wanted to talk.

And I see that "Joan" posted above. That put a quick smile and a brief glossy eye in seeing that. Odd, I also found today a bible that was given to her when she was a little girl. I also found a small hand written not inside about 3 psalm verses to read and something else from John or another. I still have to go and read them. If they meant enough to her to write them down, then they would mean something to me. I recognize her hand writing and know for a fact it's Mom from when she was of course an adult. But still, a nice gift. Being a very old bible, and it's starting to fall apart, I'm going to have it restored. It's written on inside with a note to Mom when it was given to her. And then less than an hour or 2 later, I end up in this thread and seeing her post.

Life works in mysterious ways and so does the man above. For whatever little bit it helps you, I read the good book and handle my own prayers my way. And you both will be thought of in them.

[revelarts]

I'm feeling angry and so sad. Want to be home, but brother is heading back to FL for 2 weeks until Jay has appt for what is to come at Rush, seems the 'best' for this in Chicago. Trying to keep mind off, then feeling guilty for trying not to feel. Arrgg!

Emotions can swing all over, hang on.
God knows whats what, and never leaves us.

[Kathianne]

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


2023 was a hard year for me. After dealing with my brain tumor for more than 16 years, I have recently found out that I now have an even bigger challenge. I have been diagnosed with having ALS, or more commonly known as Lou Gehrig's disease. It is a rare nervous system disease that has no known cause and no cure. However, despite this challenge, I still try to keep my upbeat, positive attitude as I have always had before. I have a great support system from my family and my true friends that are here to help me in any way they can. Every day I realize how thankful I am for what I have. Life is good!

[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-Ordinary-Campaign/dp/B0CXWTTYD7/ref=sr_1_1?crid=1YQ5T4998KXZH&dib=eyJ2IjoiMSJ9.oMvHfGWo4fh6DlA-c1eMW9wDdYQxFAQrywdaUY1HMsXJWKzprUeo5hTMFFnMU22Rnp wS9OYoTQEuJ1xqJm_180blYlJXsZ5ytwhORnBTUZGJSoIMV4oU ZP0Tx8FH032BKRbZLGe9nlSOxY1h4BLscMhmiugy7EcDApcV1j _oU6Q-u_RNyXws0doJV6g6ioBGckp0wlatjSLBppoIKIQ2zLa9kaPtvu FLCrooFJcWh6E.VV6JPkEwMs4qoUEb7zEyRzLDkSmJyY9-0Qk8d0Lt_1o&dib_tag=se&keywords=for+love+and+life+no+ordinary+campaign&qid=1716907802&s=instant-video&sprefix=not+an+ordinar%2Cinstant-video%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-Ordinary-Campaign/dp/B0CXWTTYD7/ref=sr_1_1?crid=1YQ5T4998KXZH&dib=eyJ2IjoiMSJ9.oMvHfGWo4fh6DlA-c1eMW9wDdYQxFAQrywdaUY1HMsXJWKzprUeo5hTMFFnMU22Rnp wS9OYoTQEuJ1xqJm_180blYlJXsZ5ytwhORnBTUZGJSoIMV4oU ZP0Tx8FH032BKRbZLGe9nlSOxY1h4BLscMhmiugy7EcDApcV1j _oU6Q-u_RNyXws0doJV6g6ioBGckp0wlatjSLBppoIKIQ2zLa9kaPtvu FLCrooFJcWh6E.VV6JPkEwMs4qoUEb7zEyRzLDkSmJyY9-0Qk8d0Lt_1o&dib_tag=se&keywords=for+love+and+life+no+ordinary+campaign&qid=1716907802&s=instant-video&sprefix=not+an+ordinar%2Cinstant-video%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/