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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Raena

Name: Raena

Age: 13

Where do you call home? Sioux Falls, South Dakota

Education: 8th grade.

How long have you been living (or known you are living) with Friedreich's Ataxia? One year.

What do you like to do to stay active and what type of exercises do you do to stay strong? Playing with friends, theater and Pilates.

What's your most comfortable pair of shoes to wear? No shoes.

Do you participate in any adaptive sports or recreational activities? Performing Arts.

Matthew Di Iorio

Name: Matthew J. Di Iorio

Age: 33

Where do you call home? Johnston, Rhode Island

Education: I received a Bachelor of Science in Buisness Administration in 2004 from Bryant College.

How long have you been living (or known you are living) with Friedreich's Ataxia? 20 years, August 4, 1994. I was diagnosed in Rhode Island by Dr. Karen Kerman, then she sent me to Boston for a second opinion.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My maternal grandfather had Parkinson's-isms. His neurologist claimed he did not have Parkinson's disease.

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.

Hannah and Austin Stacks

Hannah and AustinName: Hannah and Austin Stacks

Age: 11 (Hannah) and 7 (Austin)

Where do you call home? Cumming, Georgia

Who do you live with? With our parents and each other.

Education: 6th grade at Liberty Middle School (Hannah) and 1st grade at Matt Elementary School (Austin)

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.

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