don’t miss today.

Happy 2024.

We had a quiet holiday with families, and Tess partook in her favorite pastime: spoiling the nieces and nephews. We are delayed in writing this, but we suffered a terrible heartache with the passing of our dear friend, Lynn Giovannelli, after her 3.5-year battle with ALS. Lynn was one of the first people we met with ALS after my diagnosis, and she co-chaired A.Love.Story. gala with us last April. She was a beautiful person both inside and out. Wife to Gino, our favorite drummer and mother to three amazing boys: Marco, Luca, and Stefano. She showed me how to fight with grace, and I am eternally grateful for her friendship and profound impact on our lives.

Lynn’s passing and unbelievable celebration of life caused me to do some reflecting as early January was the two-year milestone of my diagnosis (reminding me that the life expectancy for the average ALS patient is 2-5 years). How can it be two years? In that time, we have:

• We moved to Mendota Heights: twice (apartment and home remodel)

• Completed a 14-month stem cell trial at Mayo

• Spoke at multiple ALS events

• Raised over $700,000 for ALS TDI with A. Love. Story.

• Retired from working (Tess took a new role within her company to travel less)

• Experienced multiple falls, surgeries, and hospital stays

• I have progressed much quicker than we had hoped, considering my age, and have lost nearly all function in my arms and legs. I am fed through a feeding tube but have maintained my ability to speak and swallow.

Despite the progression, I remain steadfast in this fight. I started a new investigational drug from Northwestern University in September, and we have seen a marked slowing in my progression. We are encouraged and hoping for FDA approval, perhaps even this year. We remain in awe of our friends and family's outpouring of support and love. Thank you for everything, and keep throwing punches.

In the words of Lynn Giovannelli…”don’t miss today”
Love, Kevin

Lori Larson Heller, Lynn Giovannelli, Tessa & Kev