Since Sean, the FV Brenna A and crew made their debut on Discovery's "Deadliest Catch," we have had some amazing things happen for ALS Awareness. Yes, this post I'm going to talk about ALS, ALS Awareness, ALS Therapy Development Institute (ALS TDI) and the unique ways that we have been able to raise money for this horrible horrible disease, thanks to Discovery Channel.
It's been four years since Pat decided he was done living with his ALS. When we were all saying our goodbyes to him, one thing that Sean said to him was, "I'll be watching for the challenges you throw at me Dad." Pat and I knew that Sean, and Brenna, would be able to handle what came their way because of Pat's wisdom and skills that he passed on to them.
Signs
Little did we know that one of those challenges would be being approached by Original Productions (the production company that films Deadliest Catch for Discovery...thank you Decker, Lisa and all for telling our story) to become the new boat on "Deadliest Catch." There were many times along the way that we saw Pat's hand in this. Side note, I'm a firm believer in "signs," you know, something happening that can only be attributed to that person you are missing. Or not even missing, something that pops up out of the blue and it can only be described as crazy!
Sign #1
Let me give you a couple of examples...I'm sure you all know about the 4, 14 connection and Pat. he was born April 14, 4-14. He passed away on June 4th at 4:14 pm. His good friend Melissa passed away from her ALS, at 4:14pm the next day. So, when we, our family, sees the number, 4, 14 or 414, we know that Pat is around somewhere.
When Sean and I went to the Emmys in September, after the award ceremony, there is a huge lovely dinner. Sean, Sig, June and a bunch of crew from Original Productions were standing around outside, getting ready to walk over to the dinner venue. Sean is handed our table seating assignment...guess what table we were seated at...Yep, table number 414. Sean and I looked at each other in disbelief, I texted Brenna a picture of the table number, and we were all just kinda in shock...but them we all started laughing and thought, "of course Pat is here, he loved a good party!" (I of course, was crying before I was laughing!)
It's been four years since Pat decided he was done living with his ALS. When we were all saying our goodbyes to him, one thing that Sean said to him was, "I'll be watching for the challenges you throw at me Dad." Pat and I knew that Sean, and Brenna, would be able to handle what came their way because of Pat's wisdom and skills that he passed on to them.
Signs
Little did we know that one of those challenges would be being approached by Original Productions (the production company that films Deadliest Catch for Discovery...thank you Decker, Lisa and all for telling our story) to become the new boat on "Deadliest Catch." There were many times along the way that we saw Pat's hand in this. Side note, I'm a firm believer in "signs," you know, something happening that can only be attributed to that person you are missing. Or not even missing, something that pops up out of the blue and it can only be described as crazy!
Sign #1
Let me give you a couple of examples...I'm sure you all know about the 4, 14 connection and Pat. he was born April 14, 4-14. He passed away on June 4th at 4:14 pm. His good friend Melissa passed away from her ALS, at 4:14pm the next day. So, when we, our family, sees the number, 4, 14 or 414, we know that Pat is around somewhere.
When Sean and I went to the Emmys in September, after the award ceremony, there is a huge lovely dinner. Sean, Sig, June and a bunch of crew from Original Productions were standing around outside, getting ready to walk over to the dinner venue. Sean is handed our table seating assignment...guess what table we were seated at...Yep, table number 414. Sean and I looked at each other in disbelief, I texted Brenna a picture of the table number, and we were all just kinda in shock...but them we all started laughing and thought, "of course Pat is here, he loved a good party!" (I of course, was crying before I was laughing!)
Sign #2
Then there is the other example. Brenna and the FV Jennifer A pulling into an anchor spot on their first salmon tendering trip of the season. They anchor in a secluded bay, and the other boat anchored in the same bay, the Lynda...the boat Pat and I met on way back in the day when we first started tendering together. Brenna sent me a picture of the Lynda and said, "look who is here!" Of course Pat would be there to say hello to his baby girl on the first opening of Brenna's first salmon tendering season in...4 years!
It's those kinds of things that happen, and they make us smile. But again, I've gotten of track!
Along the way, as we were making preparations to get the Brenna A ready to fish the Bairdi season, there were many signs that Pat was with us. While I say it was a challenge, I mean it in the sense that it was a huge consideration for us to get the Bren ready to go crabbing, so many pieces had to come together. They did, and here we are today. I'll tell you more about the signs later if you want to hear them, but...in the end, this "challenge" came in the form of a huge gift. Thanks Discovery.
Then there is the other example. Brenna and the FV Jennifer A pulling into an anchor spot on their first salmon tendering trip of the season. They anchor in a secluded bay, and the other boat anchored in the same bay, the Lynda...the boat Pat and I met on way back in the day when we first started tendering together. Brenna sent me a picture of the Lynda and said, "look who is here!" Of course Pat would be there to say hello to his baby girl on the first opening of Brenna's first salmon tendering season in...4 years!
It's those kinds of things that happen, and they make us smile. But again, I've gotten of track!
Along the way, as we were making preparations to get the Brenna A ready to fish the Bairdi season, there were many signs that Pat was with us. While I say it was a challenge, I mean it in the sense that it was a huge consideration for us to get the Bren ready to go crabbing, so many pieces had to come together. They did, and here we are today. I'll tell you more about the signs later if you want to hear them, but...in the end, this "challenge" came in the form of a huge gift. Thanks Discovery.
Discovery Opportunities
Back to the reason my blog post is titled, "Thanks Discovery." It is because without this opportunity, we would not have had the chance to raise ALS awareness on this international level, and the amazing fundraising opportunities that have happened because of our being on the show, well, it's been humbling.
Plus, we have received emails from other families that are living with ALS or have lived with it. Those emails are heartwarming and heartbreaking at the same time. But, motivating as well. Motivating as it keeps us trying to find a treatment for this disease. Also because of the show, people have volunteered to help us raise money for research and the potential treatment in the freezer at ALS TDI. (More on that at the end of the blog post!)
Florida!
When the show first aired, Sean received an email from Florida. It was from our now friend Leslie, who owned an online clothing boutique. She was moved by our story and wanted to sell a "Brenna A" dress and donate profits to ALS research at TDI. Leslie and Brenna chose a dress, the "Brenna A" dress went on sale, online and sold out within the day. We were all floored! The amazing thing, Leslie and her family have no connection to ALS...they just wanted to help in some way. Thanks Leslie.
Back to the reason my blog post is titled, "Thanks Discovery." It is because without this opportunity, we would not have had the chance to raise ALS awareness on this international level, and the amazing fundraising opportunities that have happened because of our being on the show, well, it's been humbling.
Plus, we have received emails from other families that are living with ALS or have lived with it. Those emails are heartwarming and heartbreaking at the same time. But, motivating as well. Motivating as it keeps us trying to find a treatment for this disease. Also because of the show, people have volunteered to help us raise money for research and the potential treatment in the freezer at ALS TDI. (More on that at the end of the blog post!)
Florida!
When the show first aired, Sean received an email from Florida. It was from our now friend Leslie, who owned an online clothing boutique. She was moved by our story and wanted to sell a "Brenna A" dress and donate profits to ALS research at TDI. Leslie and Brenna chose a dress, the "Brenna A" dress went on sale, online and sold out within the day. We were all floored! The amazing thing, Leslie and her family have no connection to ALS...they just wanted to help in some way. Thanks Leslie.
Woodinville, WA!
Then there is our friend Rich, who like Leslie, has no connection to ALS, other than wanting to help. Rich was introduced to ALS by his friend Mike, Mike's mom passed away from ALS. Rich brews the Brenna A beer for us. For every pint sold, $1.00 goes back to ALS research. Rich has participated in the ALES for ALS program, which is nationwide. The ALES for ALS program is a summer fundraiser, but because of Rich at Triplehorn Brewing, the Brenna A beer is available year round, and will be raising money for ALS TDI. Thanks Rich.
Then there is our friend Rich, who like Leslie, has no connection to ALS, other than wanting to help. Rich was introduced to ALS by his friend Mike, Mike's mom passed away from ALS. Rich brews the Brenna A beer for us. For every pint sold, $1.00 goes back to ALS research. Rich has participated in the ALES for ALS program, which is nationwide. The ALES for ALS program is a summer fundraiser, but because of Rich at Triplehorn Brewing, the Brenna A beer is available year round, and will be raising money for ALS TDI. Thanks Rich.
Fremont, WA
Then, there are our friends Mike and Patti of Fremont Mischief Distilery. When Pat and I first started out in the fishing industry, we did all of our out-of-the water shipyard work at the yard Mike owned. Mike and Pat were friends, and he and Patti reached out to us after seeing Sean's story on the Discovery Channel. Mike and Patti are true and genuine charity supporters. They asked us to participate in their Captains, Casks, and Cocktails Fundraiser. This fundraiser is done along with some of the other Deadliest Catch Captains, (Sig, Keith, Casey and Josh) and with the kick off event, we were able to raise over $5000 in one day for ALS TDI. This event ongoing and we will keep you posted!
Then, there are our friends Mike and Patti of Fremont Mischief Distilery. When Pat and I first started out in the fishing industry, we did all of our out-of-the water shipyard work at the yard Mike owned. Mike and Pat were friends, and he and Patti reached out to us after seeing Sean's story on the Discovery Channel. Mike and Patti are true and genuine charity supporters. They asked us to participate in their Captains, Casks, and Cocktails Fundraiser. This fundraiser is done along with some of the other Deadliest Catch Captains, (Sig, Keith, Casey and Josh) and with the kick off event, we were able to raise over $5000 in one day for ALS TDI. This event ongoing and we will keep you posted!
Alaska!
Then, there is the restaurant in Ketchikan Alaska, my hometown. Last summer, a friend of mine, Doug, from high school called me up and said he had a business proposition for me. We met for lunch and over the course of the conversation, Doug said they wanted to rebrand the restaurant. They wanted to name it "Dwyer's Crab and Fish Company" restaurant. He wanted to help tell the ALS story through Sean and the Deadliest Catch, give the restaurant a local feel and help raise funds for ALS research. For being able to tell our story, and use our name, we receive a portion of the profits with are donated back to ALS research as ALS TDI. Through the restaurant Doug is also raising more funds. Again, while Doug doesn't have any disease connection to ALS, he lost a friend to ALS, and both Doug and I have other mutual Ketchikan friends who have lived with ALS, or are living with it now.
This really is a huge and incredible opportunity to raise awareness and funds for ALS. There will be 1 million people through Ketchikan this cruise season. Dwyer's Crab and Fish Company Restaurant is featured in the coupon book on board the Cruise boats, so ALS awareness starts then. Dwyer's is located right on the dock where the boats tie up...it's an orange building it's easy to see! So, if you are going on an Alaska Cruise, that stops in Ketchikan and are looking for a local restaurant to have lunch or dinner at, head to Dwyer's. Not only can you order King Crab, but you will be helping to support a cause that is so important to Sean, Brenna and me, and Doug and many people in Ketchikan, and around the world. Thanks Doug.
Why we do it
Really, I can not put into words how humbling this all. Especially when I receive a story like this from Doug in Ketchikan:
" Another cool story. A group of 8 came in yesterday. One of the fellows in the group had the early stages of ALS. They said they had heard of the restaurant and wanted to come. They bought 8 shirts and 3 sweaters. They also each made a $10 donation to ALS for a total of $80. They knew about the place you work with, ALS TDI. Alaska was on the guy's bucket list and he wanted to do it before he progressed. Cool group."
Then, there is the restaurant in Ketchikan Alaska, my hometown. Last summer, a friend of mine, Doug, from high school called me up and said he had a business proposition for me. We met for lunch and over the course of the conversation, Doug said they wanted to rebrand the restaurant. They wanted to name it "Dwyer's Crab and Fish Company" restaurant. He wanted to help tell the ALS story through Sean and the Deadliest Catch, give the restaurant a local feel and help raise funds for ALS research. For being able to tell our story, and use our name, we receive a portion of the profits with are donated back to ALS research as ALS TDI. Through the restaurant Doug is also raising more funds. Again, while Doug doesn't have any disease connection to ALS, he lost a friend to ALS, and both Doug and I have other mutual Ketchikan friends who have lived with ALS, or are living with it now.
This really is a huge and incredible opportunity to raise awareness and funds for ALS. There will be 1 million people through Ketchikan this cruise season. Dwyer's Crab and Fish Company Restaurant is featured in the coupon book on board the Cruise boats, so ALS awareness starts then. Dwyer's is located right on the dock where the boats tie up...it's an orange building it's easy to see! So, if you are going on an Alaska Cruise, that stops in Ketchikan and are looking for a local restaurant to have lunch or dinner at, head to Dwyer's. Not only can you order King Crab, but you will be helping to support a cause that is so important to Sean, Brenna and me, and Doug and many people in Ketchikan, and around the world. Thanks Doug.
Why we do it
Really, I can not put into words how humbling this all. Especially when I receive a story like this from Doug in Ketchikan:
" Another cool story. A group of 8 came in yesterday. One of the fellows in the group had the early stages of ALS. They said they had heard of the restaurant and wanted to come. They bought 8 shirts and 3 sweaters. They also each made a $10 donation to ALS for a total of $80. They knew about the place you work with, ALS TDI. Alaska was on the guy's bucket list and he wanted to do it before he progressed. Cool group."
Not enough ways to say thank you
So. Back to the title of the blog, "Thanks Discovery." I just really want to say "Thanks Discovery!" Not only by your monetary donation, but by including Sean and the FV Brenna A on "Deadliest Catch" you are making a huge difference in the ALS world. By letting us tell our ALS story, you are inspiring others, to help us raise awareness, raise money and that will help us find a treatment for ALS.
I have always said "you don't do ALS alone," and "once you meet ALS, it never leaves you." Just as there are not enough ways to say thank you, there are not enough words either. I will end this blog with a simple thank you. But I hope you know that simple thank you comes with the largest and immense gratitude of those of us in the ALS community.
Discovery, you have already helped to change the course of this disease, ALS. Simply put, but heart felt around the world, thank you.
So. Back to the title of the blog, "Thanks Discovery." I just really want to say "Thanks Discovery!" Not only by your monetary donation, but by including Sean and the FV Brenna A on "Deadliest Catch" you are making a huge difference in the ALS world. By letting us tell our ALS story, you are inspiring others, to help us raise awareness, raise money and that will help us find a treatment for ALS.
I have always said "you don't do ALS alone," and "once you meet ALS, it never leaves you." Just as there are not enough ways to say thank you, there are not enough words either. I will end this blog with a simple thank you. But I hope you know that simple thank you comes with the largest and immense gratitude of those of us in the ALS community.
Discovery, you have already helped to change the course of this disease, ALS. Simply put, but heart felt around the world, thank you.
How can you help? Want more info about ALS?
ALS is a disease that affects the nerves/motor neurons in the body. The person living with ALS eventually becomes paralyzed. They lose their ability to speak and breathe on their own, while their mind remains as sharp as ever. Most people diagnosed with the disease live 2-5 years. Click here for a more detailed description.
I serve on the Board of Directors for ALS Therapy Development Institute. They are the world's largest non-profit biotech research lab, focusing on only ALS research. They have 30 scientists on staff, working around the clock to help #endALS
ALS TDI has a treatment sitting in their freezer but we are trying to raise funds to bring that treatment to clinical trial.
AT-1501, in preclinical trials, this potential treatment is the most effective treatment tested at ALS TDI, according to Dr. Steve Perrin, Ph.D, CEO, CSO at ALS TDI.
I've seen the drug. It's real and it ready. With your help, we can move this drug from the freezer to clinical trial. If you can help with a donation, click here. Thanks so much.
And again, a huge heart felt thanks to Discovery Channel for giving us this opportunity.
ALS is a disease that affects the nerves/motor neurons in the body. The person living with ALS eventually becomes paralyzed. They lose their ability to speak and breathe on their own, while their mind remains as sharp as ever. Most people diagnosed with the disease live 2-5 years. Click here for a more detailed description.
I serve on the Board of Directors for ALS Therapy Development Institute. They are the world's largest non-profit biotech research lab, focusing on only ALS research. They have 30 scientists on staff, working around the clock to help #endALS
ALS TDI has a treatment sitting in their freezer but we are trying to raise funds to bring that treatment to clinical trial.
AT-1501, in preclinical trials, this potential treatment is the most effective treatment tested at ALS TDI, according to Dr. Steve Perrin, Ph.D, CEO, CSO at ALS TDI.
I've seen the drug. It's real and it ready. With your help, we can move this drug from the freezer to clinical trial. If you can help with a donation, click here. Thanks so much.
And again, a huge heart felt thanks to Discovery Channel for giving us this opportunity.
RSS Feed