Off my heels and into some wheels!


Hi my name is Lake and I suffer from a degenerative neuromuscular disease called Friedreich's Ataxia. Which is a progressive and life shortening disorder. Since robot legs haven't been invented, the next best thing is a wheelchair. Not just any wheelchair, but one that can give me my independence back! I need one lightweight and durable, so I can pick it up and it can be my "legs" for many years. The wheelchair I need, health insurance will not cover so with your help it can be a possibility.
Thank you dearly,
Lake


What is Friedreich's Ataxia?

Friedreich's ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA is usually between the ages of 5 and 15 and tends to be associated with a more rapid progression. Late onset FA (LOFA) can occur anytime during adulthood. FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.
Signs and Symptomsloss of coordination (ataxia) in the arms and legs
fatigue - energy deprivation and muscle loss
vision impairment, hearing loss, and slurred speech
aggressive scoliosis (curvature of the spine)
diabetes mellitus (insulin - dependent, in most cases)
a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)

These symptoms are not present in all individuals with FA, for example diabetes occurs in about 10-20% of individuals with FA. The mental capabilities of people with Friedreich's ataxia remain completely intact. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s.
CauseFA is a genetic disorder. FA patients have gene mutations that limit the production of a protein called frataxin. Frataxin is known to be an important protein that functions in the mitochondria (the energy producing factories) of the cell. Frataxin helps to move iron and is involved with the formation of iron-sulfur clusters, which are necessary components in the function of the mitochondria and thus energy production. We also know that specific nerve cells (neurons) degenerate in people with FA, and this is directly manifested in the symptoms of the disease.
TreatmentsThere are currently no treatments for FA. Patients are monitored for symptom management. FARA is funding research to find a cure. We believe the treatment era for FA is now! As a result of great advancements to understand the cause of the disease, new treatments are now emerging. These treatments address the causes of FA such as gene mutation, frataxin production, iron sulfur clusters, and mitochondrial function. A full listing of treatment initiatives can be viewed in FARA's treatment pipeline. Several of these treatments will be in clinical trials which require patient participation.

For More Information about Friedreich's Ataxia please go to www.curefa.org.
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Organizer

Lake Denk 
Organizer
Kansas City, MO
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