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

2021
January 27, 2021
Diagnosis

Diagnosed with Amyotrophic Lateral Sclerosis (ALS)

Expanded
Right upper extremity

Progressive loss of functional use of the right upper extremity

2022
Expanded
Left upper extremity

Progressive loss of functional use of the left upper extremity

2023
Expanded
Lower extremity

Onset of lower extremity weakness

2024
Expanded
Lower extremity

Continued decline in lower extremity strength

Expanded
Mobility

Increasing mobility limitations

2025
Current status
Expanded
Climb stairs

Unable to climb stairs

Expanded
Rising from a seated position

Difficulty rising from a seated 90° position

Expanded
Dressing

Requires assistance with dressing

Expanded
Bathing

Requires assistance with bathing

Expanded
Handicap-accesible vehicle

Actively researching a handicap-accessible vehicle

Expanded
Wheelchair

Anticipated transition to full-time wheelchair use in the near future

Expanded
Falls

Multiple falls resulting in concussions

Expanded
Fracture

Fracture of the mastoid bone with bleeding from the inner ear

Expanded
Vertigo

Persistent vertigo following injury

Expanded
Hospitalization

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.

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