Moving Forward For Ataxia

PROVIDING FREEDOM AND INDEPENDENCE WITH RECUMBENT TRIKES

About Jack

In 2020, Jack, age 22, was diagnosed with Spinocerebellar Ataxia (SCA), which was significantly impacting his balance and coordination. Within the year, he was using a wheelchair and had to give up most of the hobbies he enjoyed. He could no longer drive. Not one to despair Jack focused on what he could do, not what he couldn't. In December 2020 another Ataxian suggested Jack try riding a recumbent trike. He started with a few laps around the park. Soon he was using his trike as a mode of transportation to get to the barber, to the store, or to meet a friend. By 2023, Jack was no longer using a wheelchair, was riding up to 100 miles at a time, and his mom, Monica, had gotten her own trike to join him.
Jack wanted to share the freedom, independence, and joy he found riding a recumbent trike with other Ataxians. Unfortunately, the cost of a recumbent trike is prohibitive for most who are on a fixed income because of their disability.
Jack came up with a plan for that. In order to raise awareness and funds to donate trikes, Jack and Monica rode from Maine to Ohio in 41 days in 2024 and from Pittsburgh to D.C. in 6 days in 2025. Jack has now logged more than 7,000 miles on his trike and continues to add more daily. Moving Forward For Ataxia has raised more than $40,000 and has donated 12 trikes so far.

About SCA

SCA is a rare genetic degenerative neurological disease caused by damage to the cerebellum, the part of the brain that is responsible for coordinating movement. it affects an estimated 20,000 people in the U.S.

Many symptoms of SCA mimic those of being drunk and can include:

  • gait abnormalities

  • stumbling

  • frequent falls

  • slurred speech

  • trouble swallowing

  • eye movement abnormalities

  • tremors

  • deterioration of motor skills

  • heart complications

Symptoms vary by person and type of Ataxia. Rate of progression can also vary. Symptoms may worsen slowly, over decades or rapidly, over months. Complications from the disease are serious and debilitating. Individuals affected by SCA often require the use of assistive devices to aid in their mobility. More information can be found on the National Ataxia Foundation website: https://www.ataxia.org

About Treatment

Research is ongoing, but there is currently no cure for SCA. The goal of treatment is to improve the quality of life. Medication can manage some of the symptoms for some people. Staying active for as long as possible is the primary treatment goal. Current guidelines recommend that people with SCA perform daily physical activity to maintain functional abilities as lower fitness levels are associated with more and worsening symptoms. Studies show that self initiated exercises are routinely performed because they are found to be enjoyable and safe , whereas prescribed home physical therapy exercises are rarely completed.

About Trikes

The symptoms of SCA make it unsafe and difficult or impossible to ride an upright bike. A tadpole style recumbent trike, with 2 wheels in the front and 1 in the back, with a low center of gravity offers greater stability and control. The trike's wide chair like seat provides better support for the neck, back, and hips putting less stress on pressure points. The reclined position reduces stress on neck, shoulders, and wrists, which are areas that are under stress on an upright bike. Recumbent trikes can be fitted with assist bars for getting on and off, strap in pedals, and lights, reflectors and flags to increase visibility.

Our Recipients

Chris-PA, Andrew-TX, Chez-OR, Savannah-MO, Kimmy-MO, Brittany-MI, Daniel-NV, Shillene-NM, Jessica-IA, Shiva-CA...

Contact:
[email protected]Moving Forward For Ataxia is a 501(c)(3) charitable organization
EIN/Charity ID: 37-2179031