ALS Phase II Clinical Trial

Jeff and I travelled 6 hours round trip to Ohio State University today for a Phase II Clinical Trial. We spent 3 hours with a medical team who evaluated his total body muscle strength, breathing capacity, drew blood, and administered round 1 of the drug AMX0035.

Preclinical studies with AMX0035 in animal models of ALS showed that the drug combination can effectively inhibit nerve cell death and inflammation of nerve cells…essentially slowing down the progression of ALS. This is not a cure but hopefully steps towards slowing down the disease.

Jeff will drink a foul tasting powdered drink every day for the first 3 weeks and then twice a day for the duration of the 6 month trial. We will go to OSU every 3 weeks for evaluation. At the conclusion of the trial, Jeff will have access to the drug for 1 year while it remains in clinical trials (this is called Open Label Extension).

Medical Update:

We agreed to be vulnerable with you and to help create ALS awareness. While daily life is challenging, we live each day to the very best of our ability. We laugh more than we cry and we savor the little moments. Even just lying in bed while his IV is dripping has become my favorite place to be…we’re together. Driving…we’re together. Watching our boys rock climb…we’re together. I realize the update below is hard to read. It’s harder to watch and even harder to live. It’s a progressive disease so each post will generally reveal decline. AMX0035, here is where you come in and stop ALS in its tracks! There are brilliant minds working towards a cure and we hope and pray we will see the efforts of their relentless research. As I have mentioned before, we experience loss daily. To survive the fears of the day and the fears of our future, we focus on the good and we are committed to living extraordinarily well. Jeff makes me laugh every single day! He is happy and draws his incredible strength from his family, friends, and primarily from his Heavenly Father. I love doing life with this man! He loves me fiercely and it’s so easy to reciprocate.

In the past 3 weeks, Jeff has declined primarily in lower body mobility. He stopped driving 2 weeks ago because reaction time is declining. We turned in his sedan and are down to 1 vehicle. We will be purchasing a wheelchair accessible van ASAP. Walking is extremely difficult and he can only stand unassisted for short periods of time. He needs complete assistance standing from a seated position 100% of the time now. His ability to chew, eat, swallow and breathe still remain strong, however attempts to cough are very weak. Abdominal muscles are used for coughing (rectus abdominis, internal and external obliques, and the transverse abdominis) and Jeff’s are very weak. His core (including hip flexors) has atrophied and therefore he can not sit up in bed, roll over in bed, get up from a seated position, get into a car, buckle a seatbelt, put on sunglasses (headphones, a hat), carry weight, etc. Fine motor skills are suffering and therefore he needs complete assistance cutting food, opening bottles or food packages, getting dressed, etc. Using utensils are becoming increasingly challenging and getting his arms to his face to eat is strenuous and utterly exhausting. The weight of a cup is too much, so he uses a straw to drink.

His mind is sharp but his body just won’t flipping move! A former marathoner, cyclist, triathlete, skier, and adventurer, now can’t fold laundry, help with dishes, get dressed, drive Evan and Cole to rock climbing practice or wrap his arms tightly around me.

Heavy stuff.

On the bright side (we have many reasons to be thankful).

1. We just returned from a week in Colorado. I will blog about our amazing ski/mountain retreat soon. The views were breathtaking! We absolutely loved our time together with dear friends. We didn’t want to come home!

2. Our new home in Westfield, IN is ready for dry-wall and should be finished late May/early June.

3. We are in the midst of planning a summer full of dreams…Jeff’s 40th birthday on July 4th, hopefully a trip to the National Championships in Rock Climbing, and a 3 week vacation out west to explore National parks, introduce the boys to big wall rock climbing and Tara wants to summit a Colorado 14er. We have a lot to live for! And so do you. Get busy living!

All our love,

Tara & Jeff

19 thoughts on “ALS Phase II Clinical Trial

  1. This is all so excruciatingly painful and yet the heart of this mom continually bursts with thanksgiving at the commitment the two of you exhibit on a daily basis to fight hard and not give up hope for a cure.. I have watched human kindness pour out abundantly upon this family in immeasurable amounts on a daily basis. Just when we think our hearts can’t take anymore, God shows up through beautiful family and friends who remind us they are fighting right along beside us all the way.
    “Fear thou not; for I am with you: be not dismayed; for I am your God: I will strengthen you; I will help you; I will uphold you with the right hand of my righteousness.”

    Liked by 1 person

  2. We appreciate your honesty and all that you share. Thank you for continuing to bring awareness.

    Best wishes with the trial and I’m so excited to hear about your summer plans. They sound incredible!

    Liked by 1 person

  3. May the good Lord guide you on this journey and give you the strength to endure. Continued thoughts and prayers for all.

    Like

  4. Thank you for sharing. I can not imagine how hard this must be. God and we are all there for you. I am praying for a successful clinical trial for Jeff and that the medication works for him. You and Jeff are an inspiration for all of us and you are certainly educating all of us about ALS. Keep believing!

    Liked by 1 person

  5. Every time I read one of your posts, I am reminded of your family’s strength and continued love for, and hope and faith in our Lord. As I was praying for you, I heard this song in my head … Diamonds by Hawk Nelson.

    Lyrics
    Here and now I’m in the fire in above my head
    Being held under the pressure don’t know what’ll be left
    But it’s here in the ashes
    I’m finding treasure
    He’s making diamonds, diamonds
    Making diamonds out of dust
    He is refining and in His timing
    He’s making diamonds out of us
    I’ll surrender to the power of being crushed by love
    Till the beauty that was hidden isn’t covered up
    Oh it’s not what I hoped for
    It’s something much better
    He’s making diamonds, diamonds
    Making diamonds out of dust
    He is refining and in His timing
    He’s making diamonds out of us
    Oh the joy of the Lord
    It will be my strength
    When the pressure is on
    He’s making diamonds
    Oh the joy of the Lord
    It will be my strength
    When the pressure is on
    He’s making diamonds
    Oh the joy of the Lord
    It will be my strength
    When the pressure is on
    He’s making diamonds, he’s making
    He’s making diamonds, diamonds
    Making us rise up from the dust
    He is refining and in His timing
    He’s making diamonds out of dust
    Making diamonds out of us
    I won’t be afraid to shine
    I won’t be afraid to shine
    I won’t be afraid to shine
    ‘Cause He’s making diamonds out of dust
    Making diamonds out of us

    I pray that this song helps you to see that your faith and strength is storing treasures in heaven.

    Treasures in Heaven
    19 “Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. 20 But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. 21 For where your treasure is, there your heart will be also.

    Love you guys,

    Margaret

    Liked by 1 person

  6. Thank you for the share. Your words continue to echo in my mind. Work is just not the same without that fantastic Homan smile that we all love and admire. We are here for you guys. Just know that you are loved.

    Liked by 1 person

  7. I so admire how you are handling this awful disease. I loss my fiancé to the disease one year ago. Like your husband, he faced each day with a smile, determination, and love of our Lord. Although he loss his earthly fight, Mark changed the hearts of so many on his journey. We received so many blessings and experienced true love from so many of our friends. I wish you continued good moments and pray his clincal trial provides him with many more wonderful days with you and your boys. God is good❤️

    Liked by 1 person

  8. Your bravery makes it possible for everyone else. Thank you! Thank you! Thank you! On another note, I live in southwest Colorado – close to SO MANY beautiful places and great big rocks. If you decide to come my way, please know you have a place to stay! Meanwhile, you remain in my heart and my prayers!

    Liked by 1 person

  9. Praying for strength for you this very minute–emotional, physical and spiritual. And praying for a cure! Keep fighting the good fight. Know that you are building an eternal legacy every day in the way you’re living your life. You are an inspiration!

    Liked by 1 person

  10. Thank you for sharing your families experience with this terrible disease.
    My Dad was just diagnosed this month with ALS and he’s headed to Seattle to start assessment for the AMX0035 Trial next week. We’re very hopeful that it will slow down his progression long enough for a effective treatment option to be approved.
    My thoughts and prayers are with you and your family. I pray every day that science is close to finding a treatment so PALS can live long full lives ❤️

    Like

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