No Responses to “Columbia MS”

  1. March 28, 2013 at 6:17 PM #

    Im so proud of you for sharing your story. Dreams do come Tru.
    Love you,

  2. March 28, 2013 at 6:18 PM #

    Id have to agree that the mutation is sciences way of explaining that Heavenly Father knew you needed to stay on Earth. A divine purpose.
    Thats what Im going with.

  3. Ying April 21, 2013 at 8:34 AM #

    As someone lnviig with this disease and someone heavily invested in finding funding and treatments, Reading statements like this in the news makes me sick!… “Drug companies do not fund research on Cystic Fibrosis because the disease doesn’t effect enough of the population to create a large enough profit margin.” That means CF research is highly dependant on fundraising such as this.The Cystic Fibrosis Foundation has one of the highest percentages of any non-profit in terms of using raised money towards research and not pouring it into advertising. That’s why CF has not been branded like some other diseases such as breast cancer. The next time these Carleton University Students wake up exhausted from a nasty hang over, barely able to breathe due to drunkenly smoked cigarettes, then maybe, just maybe they can get a feel of what lnviig with this disease is really like.CF aside, isn’t the point of fundraising to help people?

  4. Zhanna April 21, 2013 at 11:58 PM #

    I just came across this blog site! What a great idea. I don’t have CF, but I do have my own health concerns and I can relate to your post in a different way. You have a very interesting life indeed! So, I live with CP and it affects how I walk, but I have a very optimistic view on things. I like to think that being different brings quality people into my life. Though I am single at the moment I believe that being the way I am kept me from spending time with people who have different priorities when it comes to looking for a partner. I can relate to the situations where people make too much of a big deal out of my circumstances. I can just as easily relate to when people act like they don’t care at all. It’s easy to feel misunderstood in either of those situations.Here is my advice to you. I don’t think you have an obligation to tell your date on the first date. I also think you should be comfortable telling the person when you are ready to. If the person reacts poorly, it can be difficult, but just know that it is making room for someone with a bigger heart.You sound like a quality guy and you will find someone who is of the same quality because that person will see beyond the here and now. They will know that loving someone when things getting tough is more rewarding than loving someone in an easy situation because that love will have to be stronger. No situation is a waste of time. I’ve had all kinds of reactions to my differences and I have let them all go. If you haven’t already found your partner, just know that when the person comes along, they will find strength they may not have even known they had and nothing will change how they feel and you should setting for nothing less.All the best,Tammy

  5. April 24, 2013 at 8:49 PM #

    What an honor to be the mother and a guiding force in the life of my hero and son Jeremy. He had every reason to live a life of despair and emptiness, instead he defied the whole understanding of CF 30 years ago as he does today. Happy Birthday Darling, thanks for being one in a million and having the strength and courage to never let anything stand in your way. Love Mom, You will always be my HERO!

  6. May 23, 2013 at 4:59 PM #

    Where are the new ones!!

  7. May 23, 2013 at 5:10 PM #

    They are Coming Soon!!! Anthem 3.0 Part 1 & 2 have been photographed and look Amazing! I’ll post on FB when Ben gets them finished.

  8. August 20, 2013 at 5:55 PM #

    Somehow stumbled upon you on IG. Amazing story, so glad you shared. You’re a light.

    • August 22, 2013 at 4:31 AM #

      Thank you for your encouragement Janet:) I’d love to help someone if I could, we can talk anytime. 601.467.6959

  9. Jack Kruse August 22, 2013 at 2:34 AM #

    Kauf et al. Sodium selenite therapy and thyroid-hormone status in cystic fibrosis and congenital hypothyroidism. “The effectiveness of a peroral sodium selenite therapy (115 micrograms Se/m2 BSA/d) administered to cystic fibrosis patients (n = 32) could after three months be identified in a significant serum selenium increase (0.69–>0.96 mumol/L), a significant malondialdehyde decrease (2.72–>1.64 mumol/L), as well as in a significant serum vitamin E increase (4.31–>5.72 micrograms/mL). Parallel to that, a serum T3 increase as well as a highly significant decrease in the serum T4/T3-ratio were found, too, which point to improved peripheral T4–>T3 conversion during selenium medication.”

    • August 22, 2013 at 3:40 AM #

      Oh Damn, we are going to have to have some coffee again or something stronger if I am going to digest all that.ha. I wanna know more! Thanks Jack for caring:)
      I just got out of a cold bath while reading Epi-Paleo RX, so far soooo good!

  10. August 22, 2013 at 10:34 PM #

    Thanks, Jack!

    Jeremy, this is my attempt at interpretation to layman speak:
    They gave CFers 115mcg Sodium selenite per day for 3 months (i.e. but its 250mcg, maybe every other day to match dosage?; or to liquid dose the same levels)

    ..”noted a significant serum selenium increase” this is good; your cells can react to stresses better and repair faster with a higher serum selenium availability.

    ..”noted a significant malondialdehyde decrease” this is good; higher levels have been found to correlate with higher cellular stress.

    ..” serum vitamin E increase” this is good; I think you already know vitamin E is important for CFers 🙂

    ..”serum T3 increase” this is good; thyroid horomone that regulates a lot of processes, primarily surrounding metabolism. Also used by the brain.

    ..”decrease in the serum T4/T3 ratio… which point to improved peripheral T4->T3 conversion” also good; your cells are doing their job better and more easily utilizing your thyroid horomones.

    • August 23, 2013 at 6:59 PM #

      Thanks Josh/Jack we’ve talked alot about stress impacting lung function, my latest FEV1 of 60% last week is all the motivation i need to try this. It sounds awesome, cant wait to try this. Wonder if I should get labs before and after just to see the “significance”. I don’t really take pills- just enzymes and ADEK so i’ll add this to the mix. Question? When I swam 8 laps in a huge pool yesterday and was really pushing myself was I creating cellular stress?

  11. September 7, 2013 at 5:52 PM #

    Sickness! Cant wait to start! #YetiProject #YetiCollective #MohawkSteel

  12. September 7, 2013 at 5:53 PM #

    Great job Ben, iv’e watched this 50 times and see something new everytime:)

  13. September 7, 2013 at 5:55 PM #

    When will this show on a big screen? It would be the perfect short before a feature

  14. September 7, 2013 at 5:57 PM #

    ha.that really is spit! gross dude

  15. September 7, 2013 at 5:58 PM #

    Ha This is SICK, send me some!

  16. September 11, 2013 at 7:11 PM #

    Jeremy, Jack could probably give a more scientific answer to your question, but my opinion and understanding is that yes, exercise causes cellular stress.

    But not all cellular stress is necessarily bad. Exercising (or, more specifically moving/using the muscles we have) is a natural cellular stress which humans have been doing during our entire span of existence. This type of stress results in positive changes to our bodies, down to the cellular level, and is a natural method of our bodies reacting to the situations they face today and will potentially face again in the future. Our bodies react by trying to make improvements that would allow for us to manage the equivalent situation more efficiently the next time we find ourselves in it.

    Unless of course, exercise is taken to chronic levels that do not allow our bodies to naturally heal and recover from the stimulus… at this point it could become a negative stress.

  17. September 14, 2013 at 9:33 PM #

    Jeremy, I am so grateful to have been in the family when you were born. You have always been a determined young man and as you have grown you are an inspiration. You are amazing and such an example to anyone, not just someone with CF. You are a hero !!

  18. Grace October 26, 2013 at 4:03 PM #

    J. You can do this. You will discover the right way. Grasp your greatness. Continue to pick this apart. Seek the right answer. It’s there. You just have to pause. piece the puzzle together. Cast out frustrations. Breathe. Settle your heart. Settle your weary mind so the strong mind intercedes to perform what you are best at, creating a beautiful solution! It’s out there! When you get off that beeping machine, you’ll have no one to answer to…no more doctors. Just your mind. Clarity doesn’t come, it’s already there. Find it. Put. It. Together. We have to be patient and passionate enough to communicate with the truth that we discover over time. Find the solution so the kid in the other building can live as you do! Gloriously hopeful because limitations don’t exist! Because for you, as we know, they don’t :))) God has given you so many gifts that piece together to create one powerful warrior!! My powerful impactor.

    I’m so proud of you for mastering this 2 wk sesh. You are an inspiration to all of us! Love on ppl well these last few days. I love this quote from Abe Linc, “Character is like a tree and reputation like a shadow. The shadow is what we think of it; the tree is the real thing.” I know the tree. Leave behind a shadow of hope like you do for me every time I leave you! Be great! Climb great! Breathe greater!!!! Thankful for You. Your strength. Your perseverance. With forever thankfulness and love. GK #FV

  19. October 27, 2013 at 3:30 PM #

    hi Jeremy
    I’m borderline to diabetes….the doc say i have glucose intolerence . i’ve been like that for the past ten years. When I control my food, i’m never up to 7. And for a CF, we can manage to be between 4 and 8 … we cannot stop eating sugar because of our weight…. And as you know, diabetes can be a part responsible for your pulmonary drop, bacterias LOVE sugar ! Well, i know a great deal about nutrition so if you need any advice, let me know. I can help 🙂
    Take care

  20. November 12, 2013 at 6:50 PM #

    Never give up!

    How do you convince your body that fat is worth digesting though?

    I think there are serious ties between this and gut flora… CFer’s have to take soo many meds, its like your stomachs never have a chance to develop a healthy spectrum. On top of that, the pancreas is inefficent at best.

    I think bacterial replacement methods from healthy individuals need to be pursued. Kind of gross in the current form (how do you get someone else’s waste into your digestive system?), but someone is bound to capitalize on this at some point and create a pill form.

  21. November 19, 2013 at 4:41 PM #

    After nearly a week to collect my thoughts and my mind , I wondered how this trip was significant to me . When I returned from an adventure , I am always questioning myself , what my journey had brought into my life ??

    I went to meet myself I think. Alone, I dive. Without fear or anxiety. With confidence in the people I hardly knew . I was greeted like a princess in her new kingdom. The King of Mississippi who had a vision. From his throne, King Benjamin has imagined for his prince and me an adventure. Filming our lives in the most free expression that is for us: climbing. And the choice of the enchanted forest has only added to the beauty of the project. HP40 is a place a tinted by a special atmosphere with its people and trees … vibrating . I abandoned myself.

    I discovered people . Friends. Acolytes . Loves . I experienced joy , laughter and tears of indescribable emotions. By so much beauty , I was transported .

    Jeremy I wanted so much to know you . Look at you , feel you, touch you . The sound of your voice and cough . Your posture. Your eyes . All intrigued me . Even your soul . I took everything . I met a man in battle against the disease, and in harmony with his choice of weapons. You’re a warrior Jeremy . With you , I saw that the fight was to take place constantly . Never give up. Your intelligence, vision , hunger and thirst affect me . Preferring instinct to rationality , you are, my friend , tenacious and inspiring .

    There was always “Not to be touch” hanging over our heads. Not to be touch. This is what went through my mind the first time I lifted my eyes on Jeremy . Not to be touch. I just hated it. Touching is a part of who I am, it ‘s how I socialize . I hated it but still. I Respected it. For Jeremy I surrendered. I wanted to stick my skin to his, feeling his breathing difficult and loaded . I wanted to drop my head against his chest and listen to the noise , fighting in his fortress . I wanted to slip into the citadel to help fight . I wanted to teach him the rudiments of war. That I think, in a way, I did .

    Benjamin , your mind is an art work , you remarkable patience. You are, my dear friend, essential to my life now …..

    Mike , your smile is contagious , your calm,legendary. Climbing to the beauty of the sport with you was definitely rewarding

    Bird, these long eyelashes captivated me !! Flying with you was an honour, watching you climb a mystery and loving you so easy

    Gustavo ah! Gustavo ! Watching you climb , take pictures, cook , laugh , play chest … you have it all Venezuelan boy! My love for you was immediate.

    Keela my favorite southern girl ! Your smile is printed into my head ! I felt home with you .

    Kaycee , my daughter ! eager for thrills, you conquered me when you arrive , promise me you’ll keep climbing !

    Laura and her sister, Sarah , thank you for Being a witness of this adventure, your presence was warm and reassuring for me ….

    So thank you .

    That’s all I can say …. thank you

  22. November 20, 2013 at 10:09 PM #

    Everyone has asked when the film will be finished and where will it show? All I can say is Ben Smith is doing all the editing and reviewing of footage. He left HP40 with 700 GB of info- it’s gonna take a few months. As to where it will show first is a mystery to me. Some say film festivals are ideal but I ascribe to the idea of Howard Roark when asked who would let him build modern architecture: his answer was, “who will stop me”? We didn’t shoot this to sit on it for months awaiting a panel of film judges to approve our cinematography or doctors to approve our adventure. I know it’s a long shot but i’d love the premier to be at SenderOne gym in California sponsored by PRANA who as I learned recently has a son with CF that inspired his company name. I was really impressed by the article I read. I hope to meet this family one day and will be purchasing more Prana from now on:)
    here is the link:

  23. December 10, 2013 at 12:20 AM #

    Seems I spoke less than a month too soon:

    🙂 The quest continues

    • December 10, 2013 at 1:19 AM #

      Man you are awesome:) this was the weirdest article! I laughed out loud when they said it was going to be an expensive process, I can’t wait to see who buys the first patent on poop. How is the Cali winter?

      • December 12, 2013 at 7:28 PM #

        Better, question is, who will be the first lawyer to specialize in poop patent cases…. talk about a shitty job in a shitty industry 😉

        The bay has been beautiful! The weather has been a little cooler, but I embrace it at this point – and “cooler” means in the high 40s’ low 50’s while still being sunny every day. I have zero complaints; gym shorts and a tank top comprise my daily lunchtime walk outfit still and I hope to maintain it through the whole “winter”.

        The other day while I was walking, a couple old ladies told me to take care of myself (probably concerned for my health and safety, as they were very bundled up cause it was ~48 out). All I could do was smile, and say, “I am, thanks!”. If they only knew…

        I saw your latest post too; sounds like a fun time at the Kruse holiday party. I hope you have success in your continued pursuits, friend… very interested to hear how your experimenting goes. You can even borrow my mantra, used every time I am staring my shower down about to get in: The water is warm. 😉

  24. Shauna December 12, 2013 at 5:30 AM #

    The company, conversation, and wine…amazing! It was a wonderful experience to meet such great people. 🙂

    “we have about this much science and the rest is art” I loved the honesty!

  25. December 13, 2013 at 5:12 AM #

    Amazing honesty through the toughest of circumstances! To maintain calmness and thoughtfulness while being subjected to such an awful shows so much character.

  26. Jack Kruse December 18, 2013 at 12:43 AM #

    Compassion is when a person sees a need in and for others and acts on it. The leader puts them self in the other’s shoes and realizes that the other person needs a new and better pair of shoes. Compassion is an action. Compassion involves a relationship. The constituent parts of love — the acts of kindness, compassion, empathy, generosity — should moves our focus on to other people and away from the kind of brooding from our own condition, behaviors, and situations that would otherwise drive us crazy. Remember, “an eye for an eye”, eventually leads the whole world blind.

  27. December 19, 2013 at 12:34 AM #

    Glamour is the porn of style. Real style includes imperfection creatively to achieve greater humanity. you my new friend are the epitome of this………..Sometimes it is good to feel the tragedy in life. It awakens you intuitive self by making your “in box” the mouthpiece of your soul your words in this film show that…… had lots of awakenings over that 24 hrs in Canada.

    You became a devoted child whispering into the ear of your inner self to learn how honest you are…….In these pictures I saw you……behind your veil. How honest are you to yourself? You showed us. Truth allows you to live with integrity. Everything you do and say shows the world who you really are. Walking your talk is a great way to motivate yourself. No one likes to live a lie. Be honest with yourself, and you will find the motivation to do what you advise others to do. People do not listen to what you say, but they pay deep attention to what you do. The take away is simple…….pay attention to the life you live. It is who you really are. You my new friend do……….and I like that.

  28. January 28, 2014 at 5:36 PM #

    Update to Trip so far: The day I leave for NOrleans there is a really bad freeze and all the flights are canceled until tomorrow. I was going to stay with Danny’s brother in Bogota but now my flight is more direct and will leave tomorrow and only take 9 hours to fly from NO to Caracas but alas I will miss Elderado and Dan’s family!
    I had a weird (for me at least) thought as I was preparing for this trip. No matter what Im going to assume that whatever happens to me on this trip or to our crew is for the best. A million things could happen to complicate our journey so whatever happens will be for the best. Immediately i’m less stressed. Emotionally I am now ready for the adventure… Venga -JT on 1.28.14

  29. January 28, 2014 at 9:10 PM #

    Thanks so much for making my Dad’s gramophone out of a trombone! Tuan and I thought it would be the perfect gift-especially since he has taught and played trombone for so many years! You made it happen! Great job-it’s awesome! 😉

  30. January 31, 2014 at 12:27 AM #

    Everyone made it to Caracas safely, we leave on Sat for the Tepui! psyched

  31. Audrey April 6, 2014 at 7:26 AM #

    Jeremy – you are an amazing young man …….and you and Jack together are magic!
    I hope we hear lots more from you!

    I would like to know more about your Mom ……[aka – the bulldog!]

  32. Audrey April 10, 2014 at 7:07 AM #

    What a beautiful story Jeremy …… you are blessed with amazing people around you ….

  33. April 10, 2014 at 10:00 PM #

    Let’s keep changing the world, friend!

  34. June 25, 2014 at 8:09 AM #

    My 10 year old has df508 and r1162x. How is your health?

    • June 25, 2014 at 3:21 PM #

      Hi Robert, my health is good today. I swam 10 laps yesterday and did crossFit, today I will work in my shop and take a CT ice bath. How is your 10 year old? I hope he or she is outside taking in this VitD. Not sure where you live but its hot here in Mississippi.

      • April 22, 2016 at 4:09 AM #

        Hey there. Just stumbled on this and saw my old message with your response. She’s 12 now and doing good. Chronic sinusitis and a cough that lingers but other than that she’s very active with gymnastics and track and choir. Here’s my email.

  35. September 1, 2014 at 1:21 AM #

    You are an inspiration, brother! Keep living and loving. I believe in will and the power behind it. I also believe in faith and the collective prayers of all those who love you. You’ve always got a place in my heart.

  36. January 21, 2015 at 7:12 AM #

    Well.. I blew a 69 and ran out of there! If I get it up a few more points I’ll feel better. Ive never left any tuneup in the 60’s. Way weird but I was glad to get that. So thats a 50,60,61,62,69 all in 90 days. Ugh What a ride. MK time to work on this Anthem Show:)

  37. April 7, 2015 at 3:52 PM #

    Your awesome.. Love u✨❤️

  38. June 5, 2015 at 4:20 AM #

    I love my glass aqua lung even more after seeing Anthem tonight. I saw where Anthem pieces came from tonight. The naked truth is small wisdoms make big impacts in life. Tonight you did that for me. The things that really change the world, are the smallest things. A butterfly flaps its wings on a screen in Mississippi, and subsequently a vortex of possibilities may ravages the other side of the globe soon. Small changes in your energy, can lead to massive alterations in results.
    We all must learn to push hard to expect great results in this life, Jeremy. If we believe our ability is small, then our efforts will be shallow and our push lame. Your push on a rock, within a sculpture, or within a movie is not small. Your punch, your effect, is deft and sleight in its delivery. It is like the flapping wings of a butterfly disturbing the air around others. With each flap of your wings, the air becomes disturbed across great distances in our souls and minds and can span timescales in many other creatures; it will affect lives unknown to your generous spirit. Few may even know who was the source of this good echo. Your gifts have now been set free and will continue to pass on to others. It will magnify with time because your simple courtesy will become an act of selfless courage for many others with CF. It really is a “CF thing now”, for many others who feel that flap of air later, will see your breath and fell your touch. If we think we are not capable, we won’t try with effort and energy. You tried. Without strong conviction, we won’t seek the knowledge required to achieve our goals. You acted. We will not launch out into the deep or push against obstacles with the force’s breath from us to bring us confidence. Your breath is stronger than the wind of any hurricane. We manufacture our own breath to manifest destiny. You define this. Give fate a push or pull of air, to gain wisdom to breath life into your masterpiece. You create masterpieces. The world needs to see your “Anthem” my friend. Your art and your truth are now butterfly oscillations vibrating across oceans……….I can’t wait to hear those echo’s in others thoughts and see the touch of your breath on their soul’s.

  39. June 16, 2015 at 3:31 AM #

    Wow Jeremy…you are an amazing, gifted, and captivating storyteller. I am your new #2 fan (your mom, of course, #1)! The Anthem exhibit was incredible. I hope to bring my boys this week. kim g

    • June 16, 2015 at 6:28 PM #

      @Kim thank you for coming got see Anthem! And i’m glad you found my blog, I’d love to meet the boys. This Thurs, Fri, Sat 4-10 is the last weekend for Anthem- It will be bittersweet. Thank you for believing in me:)

  40. October 3, 2015 at 1:16 PM #

    He needs a suit and an umbrella. pretty good though for the first try lol

  41. October 25, 2015 at 11:40 PM #

    Enjoyed the read✨ Annnddd the recognition

  42. May 30, 2016 at 2:41 AM #

    Jeremy I am so glad you told us his story. When you look at a grave stone there is a dash between the dates. That very small dash represents a person’s whole life. It is like a book. Such an insignificant mark that contains so much untold. Your PawPaw’s dash could be a library. Indeed he was was one of the wisest, most generous, kindest men I ever met.

  43. May 30, 2016 at 3:22 AM #

    I love u brother and loved your remarks today. Just sorry I didn’t get to hug u. Your pawpaw was a great man. What a wonderful tribute in words and bronze.

  44. June 1, 2016 at 11:38 AM #

    JT – I always look forward to your work, whether that be sculpture or a tribute. Thanks for sharing once again. Your PawPaw was/is an incredible man. I value the wisdom he was willing to share with me. He truly loved people and was a family man. In my opinion, you are one of your PawPaw’s greatest successes.

    He will be missed.

  45. April 13, 2017 at 1:59 AM #

    POETIC bliss…

  46. October 15, 2017 at 2:15 PM #

    An amazing experience, my little girl loved it. Jeremy, Daniel, and the pretty girl that was there, her name slipped my mind and I apologize for that, were very curdious and informative. It was a great hands on experience that she is still talking about this morning. We will be going back several times this season. Thanks for the experience.


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