rideATAXIA NorCal - June 10, 2017

Team Lia

Family and Friends
We are again looking for your support for the 2017 Ride Ataxia Fund Raiser
As many of you are aware, on May 1, 2013, my beautiful 13 yr. old daughter Lia, was diagnosed with Friedreich’s Ataxia. Friedreich's Ataxia is an inherited disease that damages the nervous system. The damage affects the spinal cord and the nerves that control muscle movement in the arms and legs. Symptoms usually begin between the ages of 5 and 15. The main symptom is ataxia, which means trouble coordinating movements, other symptoms include:
• Difficulty walking
• Muscle weakness
• Speech problems
• Involuntary eye movements
• Scoliosis (curving of the spine to one side)
• Heart palpitations, from the heart disease which can happen along with Friedreich's ataxia
People with Friedreich's ataxia usually need a wheelchair 15 to 20 years after symptoms first appear. In severe cases, people become incapacitated. There is no cure. The good news is that there are currently over 10 clinical trials in various stages. We hope and pray that one of them results in a cure or at least slows the progression.
Well, it has been almost 5 years since Lia’s diagnosis and we have seen FA take its toll. Unfortunately, her FA has progressed and as expected, and Lia can no longer walk without full support. We have just purchased a mobility scooter for her to give her the freedom to get around. We are determined to keep a positive attitude for us and Lia and not let FA define her.
Lia (now 13) is doing well in her new private school and still enjoys producing her weekly video show. Like any 13 yr. old, she loves chatting on her phone, YouTube and her close relationships with her sister Ella and her friends. Her friends are amazing, they are always there to walk and support her when needed, they treat her like any other 7th grade girl.
As we approach June, I am looking forward to again participating in the Ride Ataxia fund raiser to find a cure for FA. As a reminder, this is a 52-mile bike ride through Nor Cal to raise money to help fight this devastating disease. I will be joined by numerous local FA families, friends and cycling enthusiasts riding as a team to redefine what is possible in FA research.
Please help us in raising money to fight this debilitating disease.
Rich, Sasha, Lia, Ella and Eli Nichols

 
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