alstdi

Here I chat with Amanda Stevens, wife & caregiver to Eric Stevens – former NFL player & L.A. Firefighter, both introduced to us on The Ellen DeGeneres Show in 2019.   Amanda and Eric were married only one month when Eric was diagnosed with ALS at a young 29 years old.  We fell in love with this young couple as they appeared on the Ellen show three times and even were on to announce that they were expecting a baby.  In the past 4 years since receiving Eric's ALS diagnosis, Amanda has dedicated her life to caring for her husband and their daughter.   Amanda and Eric have also been inspired to help others through their non profit called AxeALS Foundation.  Their mission is to raise awareness and funding for ALS treatments and clinical trials; to help ALS patients and their families live as full and normal lives as possible and to support ALS research. In this episode, Amanda shares her journey, motivation and updates on Eric and life with ALS.   Tune in for this sweet encouragement in the face of huge adversity.  Thank you for listening and sharing this episode with a friend.  Hugs, Lorri
AxeALS: https://axeals.org/

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I chat with military veteran of both the U.S. Marine Corps and the U.S. Navy, Kate Peters.  She served in the USMC 2007-2015, USN 2015-2020 and served in Operation Iraqi Freedom.   Kate is a mother of two boys, three and five and was medically retired from the military after being diagnosed with ALS, a fatal disease that has no cure.    She was diagnosed with ALS in 2020 a few weeks after her second son was born, after about 2 and 1/2 years of symptoms and a misdiagnosis.   I talk to Kate about her military experience, the connection between ALS & the military and her upcoming BIG adventure of traveling the world for a year with her young family.  Kate is considered a slow progresser with ALS, having symptoms for almost 6 years and still being fully independent and able to take care of her children.   She's been able to witness some blessings after being given a terminal diagnosis and shares some beautiful life advice that will encourage us all.   Thank you for listening in and sharing with a friend.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

This episode is just me answering YOUR questions.  I had a lot of requests for this format again, so I asked listeners to send in questions about anything and I answered them here.  I'm so grateful for all the questions that came in, about life, perspective, my ALS longevity, family and advice.  I love that my listeners feel comfortable asking me anything.  This was a super special experience.  I hope you enjoy and share with a friend.
Connect: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en and https://twitter.com/LorrisPodcast

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I talk to 34 year old TikToker, Brooke Eby who is using humor and social media to navigate life after being diagnosed with a fatal disease.  Brooke was diagnosed with the terminal illness, ALS, at a young 33.   With the support of her family, friends, and co-workers, Brooke's been able to laugh in the face of ALS by using humor on social media..  Brooke created a TikTok account @LimpBroozkit to help explain what she  was going through without making it a heavy conversation.  Not only is creating TikTok videos about ALS a case of "laughter is the best medicine" right now, but Brooke is also educating others and creating new ALS awareness.   With millions of views, Brooke's ultimate goal is that her humor continues to boost others through any hard times.  Brooke said that after getting a terminal diagnosis, she felt a mix of shock and sadness and was depressed during the first couple of months.   Right now, Brooke's TikTok videos are helping her cope.   She hopes her videos can help start conversations to drive awareness, support and ultimately cures for ALS.  Check out Brooke's TikTok channel @LimpBroozkit .  Thank you for listening in and sharing with a friend.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I am on location in Boston to bring you a behind the scenes look and my  weekend experience with the ALS Therapy Development Institute (ALS TDI) the world's foremost ALS drug discovery lab focused solely on ALS.  I was so grateful to tour the lab and attend the ALS TDI Summit which was a day of updates on the progress of ALS Research.  I wrapped up the weekend by attending their White Coat Affair gala which is a powerful evening that brings together and honors those living with ALS and remembers those whom we’ve lost.
I catch up with 5 inspirational guests as we chat about the love, passion and hope behind the lab doors of this ALS research lab.  
My conversations start directly in the lab as I talk to three scientists, Valerie Tassinari, Associate Scientist III, Anna, Gill, Associate Scientist III, Program Manager and Kyle Denton, Ph.D., Director, Cell Biology to find out what it means to work every day to discover treatments for those living with ALS.
Then I talk to Kevin and Tessa Geraghty, who are living with ALS and also attending the ALS TDI weekend events and ask them what it means to visit the lab and meet others fighting the same terminal illness.
Finally I chat with Carol Hamilton, Vice President of Development about unique ways to support their ALS research.  I loved witnessing the special bond between those who work in the lab and those who they are trying to save.  From all of us living with ALS, thank you for listening and sharing with a friend.  Hugs, Lorri

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode, I talk to Emma Terry who is a an ALS caregiver and a participant in the Miss America organization with her platform being ALS.    I catch up with this college student at the University of Alabama at Birmingham who is an ALS advocate, caregiver and granddaughter of ALS warrior, Stewart Simpson.   Emma recently turned 20 and her grandfather "Grandy" was diagnosed with ALS right before she was born.  Emma has a special relationship with her Grandy as all she's known is a lifetime of ALS with him.  Even as a full-time college student, she continues to be a caregiver for her Grandy.  He is 84 years old and his ALS has escalated to the point where he is confined to a hospital bed in his living room.  Although her Grandy cannot speak, he still has the ability to write.  So I'm so grateful that he was able to be a part of this chat as well.  You'll hear what advice he has after living with a terminal illness for 20 years.  Emma is also a participant in the Miss America organization and recently was Miss Alabama's Outstanding Teen.   Emma's platform is "Stomping Out ALS One Step at a Time" through which she raises awareness and funds to support the ALS fight.   She is also a member of I AM ALS Legislative Affairs Community Affairs team.   I love witnessing what life lessons Emma has learned through this incredibly difficult journey and the great love her and her Grandy have for each other.    Listen in and enjoy.  Hugs, Lorri

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Glynis Murray from ALS TDI joins the podcast to help us reveal the big announcement! Happy Independence Day everyone! Scott Smith is our PALS of the episode!

Here is the link to my NYC Marathon fundraising page;
https://fundraise.als.net/fundraiser/davidstanley

Follow Scott Smith's ALS journey here;
https://www.flexonals.com/

Follow us on Instagram:
@i_lost_my_person

#endals

We can't reveal the big announcement just yet, but we enjoyed the guesses, we finished Maverick, graduation parties, ECU baseball, Keith LeClair, Pride of the Yankees, Father's Day, Happy 30th Anniversary Ang, and listener questions!

Follow us on Instagram:
@i_lost_my_person

#endals

Here I chat with Andrea Peet and her husband, Dave Peet.  Andrea's been on a journey to become the first person with ALS to complete 50 marathons in 50 states.  Andrea was diagnosed with ALS at 33 years old.  Now at 40, she is super close to accomplishing her goal of completing 50 marathons in 50 states all while living with ALS, a fatal disease with no cure.  Andrea and Dave created Team Drea to raise awareness and funds to help cure ALS.  With only 3 races to go, the countdown begins with races left in California, New York and Alaska. The final race will be at Prince of Wales Island, Alaska as Andrea celebrates 8 years with ALS despite her 2-5 year death sentence.   Andrea’s journey of traveling to all 50 states will be shown in a future documentary that's being created titled, "Go On Be Brave: The Drea Story."  Andrea’s bravery and determination is incredibly uplifting.  Listen in and share this beautiful story with a friend.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode,  I catch up with Mike and Cheryl Smith who created Ales for ALS, a program that has raised over $3,500,000 for ALS research at the ALS Therapy Development Institute (ALS TDI).   Mike and Cheryl own Loftus Ranches, a fourth-generation hop farm in Washington’s Yakima Valley.  Cheryl has lost 9 relatives to ALS, including her grandfather and father.  Along the way, they've learned that her family carries a gene that causes ALS and they have dedicated themselves to fighting the disease through their Ales for ALS program.   Each year the Smiths work with hop supplier Yakima Chief Hops to donate a unique hop blend to participating brewers.   Local brewers can brew whatever style of beer they want.  Ales for ALS brewers are asked to donate $1 to ALS TDI for each pint of the resulting Ales for ALS brew sold. The funds raised go directly to ALS TDI's research lab, where their research team works to discover and develop potential treatments for amyotrophic lateral sclerosis (ALS).    Ales for ALS goes full-circle, from the Smiths’ hop fields to craft beer lovers’ glasses across the country.  Their commitment and generosity inspire me.  Thanks for listening. 
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.