Frosty updates
The following is a chronological summary of ALS progression and related medical events since diagnosis, intended to provide supporters with a clear, transparent understanding of disease progression and current care needs.
Disease Progression Timeline
Diagnosed with Amyotrophic Lateral Sclerosis (ALS)
Progressive loss of functional use of the right upper extremity
Progressive loss of functional use of the left upper extremity
Onset of lower extremity weakness
Continued decline in lower extremity strength
Increasing mobility limitations
Unable to climb stairs
Difficulty rising from a seated 90° position
Requires assistance with dressing
Requires assistance with bathing
Actively researching a handicap-accessible vehicle
Anticipated transition to full-time wheelchair use in the near future
Multiple falls resulting in concussions
Fracture of the mastoid bone with bleeding from the inner ear
Persistent vertigo following injury
One major hospitalization, including several days in the ICU
Treatment Update
- Currently receiving SPG302, an investigational ALS therapy developed by Spinogenix, an Australia-based biotechnology company
- Medication is being accessed through the FDA Compassionate Use Program, also known as the Extended Access Program (EAP).
- There is cautious optimism that SPG302 may help slow the progression of ALS.
- A portion of funds raised by Team Frosty directly supports access to this medication, as well as ALS-related medical care, adaptive equipment, and family support needs
How You Can Help
Ongoing support enables Team Frosty to continue funding treatment access, safety-related equipment, mobility solutions, and critical resources for families affected by ALS.
Donations, sponsorships, and messages of support make a direct and meaningful difference.
Thank you for standing with us in the fight against ALS.