Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

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.

The Ambassador Blog

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

D. Elizabeth Haubert

Name: D. Elizabeth Haubert

Age: 31

Where do you call home? Philadelphia, Pennsylvania

Occupation/Employment: I'm a disability rights lawyer.

How long have you been living (or known you are living) with Friedreich's Ataxia? In high school, I just thought I was kind of clumsy. I was diagnosed when I was 19.

Describe your transition from walking to walker/wheelchair. Beginning to use a wheelchair was really a watershed thing for me. I thought I would just use it for distances, but I quickly realized how freeing it was to be able to get around without worrying about trying to keep my balance. Trying to get around the city in a chair, I realized just how common physical barriers to access are, leading me to my profession and passion in disability rights.

Add a comment
Read more: D. Elizabeth Haubert

FA Woodstock and Ride Ataxia Chicago 2014

imageThe 5th annual FA Woodstock was held Thursday, July 17, 2014 – Saturday, July 19, 2014. It is a three day event hosted by the Hook Family at The Flying H Ranch in La Porte, Indiana who graciously open their home up for people affected by Friedreich’s Ataxia (FA) and their families to enjoy a variety of activities. The 21 acre ranch is home to lots of livestock including cows, horses, a mini horse, bunnies, a goat, a pig, mini donkeys, dogs, a bird and probably a few more species unmentioned. The Friedreich’s Ataxia Research Alliance (FARA) and The Children’s Medical Center of Philadelphia (CHOP) staff came out to the event to conduct medical research that would usually take half a year to collect.  

Read more: FA Woodstock and Ride Ataxia Chicago 2014

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.

Add a comment
Read more: Spotlight on Kiela Acker-Williams

Pam Shortt

Meet Pam!Name: Pam Shortt

Age: 35

Where do you call home? Ontario, Canada

Relationship status? Do you have children? Married for 13 years and counting. We have one nine year old son.

Occupation/Employment: I stopped working 10 years ago. Now I am a stay at home wife & mom which is busy, busy, busy!

Education: I graduated in 2000 with honors as a Registered Nurse.

How long have you been living (or known you are living) with Friedreich's Ataxia? I started having balance and gait issues around 15 years old. Certainly made high school more interesting! It was obvious that there was something not quite right but doctors put it down to me being a klutz. At 19, in nursing school, we were studying the nervous system and practicing performing neurological exams. I failed! I went to a neurologist and he knew it was Friedreich's Ataxia. I was sent for countless tests & finally diagnosed via genetic testing.

Add a comment
Read more: Pam Shortt
Page 87 of 99

SHARE

FacebookTwitterLinkedInYoutube
Event H.jpg

 

Archived in
  the Ambassador Blog