Donation protected
My name is Janice Cook. I am not sure how to approach this so I will just start at the beginning.
This past July began with a traditional 4th of July celebration. Every year for several years we have gone to Apple Canyon to celebrate at the Lake and then enjoy the firework display at the local town of Stockton. Life was good and we were all healthy and happy.
Toward the end of September, I came back from visiting our daughter at Florida State University and looked at my partner, Tim, and he looked sick. How was it possible that I had not noticed before this? He looked like himself in July and August, how was it that only a month later he is 30 pounds lighter for no apparent reason? His words to me, I can't erase out of my mind, "I think I am sick, Janice...". The next day we were on the phone with his primary care doctor. For the next two months, he went in for multiple tests. We went from doctor to doctor, praying all the while that this was something that could be conquered, something that the doctors would “fix”. On December 9, 2019, we were told by his neurological team that his diagnosis is amyotrophic lateral sclerosis (ALS). We were devastated, knowing we’d have to tell the news to our girls (Kaci, 19 and Jordan, 14).
We are fortunate that I have many clients in my massage practice that are doctors or wives of doctors. Tim was able to get a diagnosis very quickly due to all of them helping to get him in quickly for testing. Many are not as fortunate, we feel very blessed and grateful.
I want to write you a letter that will motivate you to help us. I don't want my soulmate to go through this debilitating journey, and he shouldn't have to. There is a procedure that could save his life, but because it is not FDA-approved it is only being selectively released and it is costly.. very costly.
I once heard a very fortunate person say "all it takes is one drop of water to start a puddle that leads to a stream, and so on. I have been praying, researching, thinking, trying, along with all of life's other duties since this began and I will continue to do so tired or tirelessly, whatever the day brings. I am trying to do many things, but my priority is working to raise money to save Tim's life. I want to be able to get him this procedure before it is too late. ALS has a varying progression, of which currently baffles even the brightest doctors and researchers. I was just a normal person living life, and now I am an advocate for the man I love. My mind says go for it! Ask and keep asking until you get a breakthrough.
So here is my request; I am asking for donations to help Tim get this stem cell procedure NurOwn . If you can spare anything at all it will be worthy as it all adds up. In addition if you could sign this petition through Change.org for BrainStorm to release NurOwn to the ALS community that would be wonderful.
As stated above ALS is a fast progressing disease it can quickly erase you from your life. The faster you can get treated the better the outcome.
There are only two approved drugs on the market currently for ALS which only stave off the progression of the disease and not in all cases.
NurOwn is in it's third trail currently and it shows that the disease stops progressing and muscle function returns.
I believe that we all want to be free of disease and live a joyful life. When we hear news that interrupts this we either "get busy living, or get busy dying", thanks Red (Shawshank Redemption) this was the first movie Tim and I saw together.
We are scrappers and we will fight for life, will you please help us?
In 2018 the "Right to Try" act was passed it is supposed to give access to those with a terminal disease the right to try any procedure or drug currently not approved by the FDA yet the cost makes it untouchable for us and many others...
Now more than ever is the time to make an impact, even if it is to save one father’s life.
Every effort to get this treatment available for ALS patience needs to be utilized. Please forward this to all of your Facebook friends. Perhaps it will make an impact greater than imagined. Let's see how powerful our community can be in fighting for those who are fighting for their lives everyday...
This past July began with a traditional 4th of July celebration. Every year for several years we have gone to Apple Canyon to celebrate at the Lake and then enjoy the firework display at the local town of Stockton. Life was good and we were all healthy and happy.
Toward the end of September, I came back from visiting our daughter at Florida State University and looked at my partner, Tim, and he looked sick. How was it possible that I had not noticed before this? He looked like himself in July and August, how was it that only a month later he is 30 pounds lighter for no apparent reason? His words to me, I can't erase out of my mind, "I think I am sick, Janice...". The next day we were on the phone with his primary care doctor. For the next two months, he went in for multiple tests. We went from doctor to doctor, praying all the while that this was something that could be conquered, something that the doctors would “fix”. On December 9, 2019, we were told by his neurological team that his diagnosis is amyotrophic lateral sclerosis (ALS). We were devastated, knowing we’d have to tell the news to our girls (Kaci, 19 and Jordan, 14).
We are fortunate that I have many clients in my massage practice that are doctors or wives of doctors. Tim was able to get a diagnosis very quickly due to all of them helping to get him in quickly for testing. Many are not as fortunate, we feel very blessed and grateful.
I want to write you a letter that will motivate you to help us. I don't want my soulmate to go through this debilitating journey, and he shouldn't have to. There is a procedure that could save his life, but because it is not FDA-approved it is only being selectively released and it is costly.. very costly.
I once heard a very fortunate person say "all it takes is one drop of water to start a puddle that leads to a stream, and so on. I have been praying, researching, thinking, trying, along with all of life's other duties since this began and I will continue to do so tired or tirelessly, whatever the day brings. I am trying to do many things, but my priority is working to raise money to save Tim's life. I want to be able to get him this procedure before it is too late. ALS has a varying progression, of which currently baffles even the brightest doctors and researchers. I was just a normal person living life, and now I am an advocate for the man I love. My mind says go for it! Ask and keep asking until you get a breakthrough.
So here is my request; I am asking for donations to help Tim get this stem cell procedure NurOwn . If you can spare anything at all it will be worthy as it all adds up. In addition if you could sign this petition through Change.org for BrainStorm to release NurOwn to the ALS community that would be wonderful.
As stated above ALS is a fast progressing disease it can quickly erase you from your life. The faster you can get treated the better the outcome.
There are only two approved drugs on the market currently for ALS which only stave off the progression of the disease and not in all cases.
NurOwn is in it's third trail currently and it shows that the disease stops progressing and muscle function returns.
I believe that we all want to be free of disease and live a joyful life. When we hear news that interrupts this we either "get busy living, or get busy dying", thanks Red (Shawshank Redemption) this was the first movie Tim and I saw together.
We are scrappers and we will fight for life, will you please help us?
In 2018 the "Right to Try" act was passed it is supposed to give access to those with a terminal disease the right to try any procedure or drug currently not approved by the FDA yet the cost makes it untouchable for us and many others...
Now more than ever is the time to make an impact, even if it is to save one father’s life.
Every effort to get this treatment available for ALS patience needs to be utilized. Please forward this to all of your Facebook friends. Perhaps it will make an impact greater than imagined. Let's see how powerful our community can be in fighting for those who are fighting for their lives everyday...
Organizer
Janice Cook
Organizer
Cary, IL