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FARAFARA Cure FA

Spotlight on Kiela Acker-Williams

Strength & Determination

Kiela Acker-Williams has been living with Friedreich’s Ataxia (FA) for more than half of her life but despite all the challenges FA brings, she remains strong and more determined with each passing year to continue fighting for a cure. Kiela was diagnosed with FA at the age of ten but symptoms began becoming apparent six years earlier. She recalls being clumsy and off-balance and always falling down. When Kiela was just seven years old she had a muscle biopsy which led to visits all over Northern California’s Bay Area in search of answers to explain her unusual gait and increasingly frequent falls. A year later she received a diagnosis of ataxia but it was not determined to be Friedreich’s Ataxia for two more years.

Kiela (left, age 8) with sisters Lucie and Kirsten. Kiela (left, age 8) with sisters Lucie and Kirsten.

With friends at BeeJay's 2012 fundraiser. With friends at BeeJay's 2012 fundraiser.

 

Making a Difference!

Around 2003, Kiela’s mom, BeeJay Acker-Hitta, began actively fundraising for FARA with at least one event every year. Whether the fundraising events were dinners, raffles, silent auctions or a team fueling the efforts in Ride Ataxia NorCal, Kiela was always involved. This year however, Kiela decided to step out and take the lead to create her own event that would benefit FARA and the search to cure FA.

 

 

“I’m tired of just not doing anything so I started my own fundraising event.”

Ride Ataxia NorCal 2011, 2012 and 2014. Ride Ataxia NorCal 2011, 2012 and 2014.This summer, Kiela has organized 15 different restaurant nights at various restaurants throughout her community of Novato, California. 14 of the restaurants are participating with one-night events while one additional restaurant has chosen to host a Monday-Thursday dinner event! “People are always going out to eat but don’t normally get anything in return. Making arrangements with restaurant owners means that a portion of the money from each dinner will be donated to FARA.” The donation to FARA from the first three restaurants has added up to $375 plus an additional $175 in private donations.



 

Loving Life

Aside from giving so much time to a summer full of dine and donate restaurant nights, Kiela is also a newlywed. This past December 15th, she and new husband, Terrence, said “I do” in front of 180 of their closest friends and family.
 

“Terrence has given me more of a reason to fight FA.”


Having so many family members from all over to be part of the couple’s special day was one of the bride’s favorite parts of the wedding. The beautiful photography is another favorite piece of the wedding celebration Terrence and Kiela enjoyed a 12 day honeymoon in France this past May. Kiela’s stepdad grew up in Paris, so they enjoyed spending time with family while they were there. From Paris, they traveled to Lyon and then onto Provence where they stayed in a beautiful chateau which was a 40 minute drive from the “stunning” French Riviera.
The dedication of Kiela and her family is greatly appreciated. With so many people around the world working towards the same goal, how can we not reach the finish line?! Cure FA!

 

Dine and Donate night at Hopmonk Tavern. Dine and Donate night at Hopmonks.

Special thanks to the restaurants participating in Kiela's Summer of Eating!

Applebee's * BJ's * California Pizza Kitchen * Chevy's Fresh Mex * Finnegans * Ghiringhelli Pizzeria Grill & Bar *Grazie Ristorante * Hopmonk Tavern * La Pinata * Mary's Pizza Shack * Moylans Brewery * Outback Steakhouse * Pasta Pomodoro * Round Table Pizza * Star Restaurant

 

 


A 'Spotlight' post wiil be featured on the FARA Ambassador Program blog on the third Thursday of each month to recognize some of the people living extraordinarily in the face of Friedreich's Ataxia. We are thankful for everyone working so hard to support the search for treatment and a cure for Friedreich's Ataxia! We hope that each post on this blog will be a source of encouragement to you.
Together we WILL cure FA!

Stephanie

 

 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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