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Betsy's Fight to end FA
December 13 will be the second annual fundraiser, called Betsy's Fight to End FA. All proceeds raised on this day will go towards Friedreich's Ataxia Research Alliance (FARA). Last year your support and donations raised over three thousand dollars.
We are once again asking for your help to make this fundraiser a success. We have received crafts, baked goods, and items donated from local businesses that we are using in a silent auction and bake sale. We are asking for your presence to make this event a success.
Betsy's Fight to End FA will take place from 12-3pm on December 13 in Hardwick Hall of First United Methodist Church in Fort Stockton. Through this fundraiser, we hope to educate the community about Friedreich's Ataxia, raise money for FARA and to have fun in Betsy's honor. We need your help in making this event possible. If you have any questions, our home phone number is 432-336-8920, or you can call 432-290-0756.
This month would have been Betsy Neyland's 27th birthday, but she passed away from complications from Friedreich's Ataxia on January 29, 2007. Please help us celebrate her life and help raise money to find a cure.
Thank you very much,
David and Ruth Neyland, and Emily Neyland (who was diagnosed with FA 16 years ago)
Friedreich's Ataxia (FRDA) is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. About one in 50,000 people in the United States have Friedreich's Ataxia. Onset of symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later.
Symptoms include:
muscle weakness and loss of coordination (ataxia) in the arms and legs
vision impairment, hearing loss, and slurred speech
aggressive scoliosis (curvature of the spine)
diabetes mellitus or carbohydrate intolerance
a serious heart condition (enlarged heart - hypertrophic cardiomyopathy)
These symptoms reflect the death of cells in certain parts of the nervous system. The mental capabilities of people coping with Friedreich's Ataxia, however, remain completely intact. For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early twenties. Many require surgery for their scoliosis. There are currently no treatments or cures. The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's Ataxia. FARA's mission is to slow, stop, and reverse the damage caused by this disorder.
FARA will continue to:
Promote scientific biomedical research - basic, translational, and clinical - through research grants, workshops, and the collaborative exchange of information within the scientific community.
Serve as a patient advocacy group to educate the public, elected representatives, and other government officials regarding Friedreich's Ataxia and the importance of funding biomedical research.
Work cooperatively with government entities and the other organizations that support scientific research aimed at treatments for this disorder.
Rally patients, patient families, scientific investigators, healthcare providers, and others to be supporters and advocates for scientific advancements that will lead to treatments and a cure.
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