Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is 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.

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.

9th Annual Anytime Fitness Charity Golf Scramble

2017AnytimeFitnessThe 9th Annual Anytime Fitness Charity Golf Scramble was March 11th 2017. Anytime Fitness was kind enough to invite FARA back again as one of the charities for the event. This event also benefits the Suncoast Animal League and a local friend battling Stage 4 cancer.

It was certainly a beautiful day for golf, about 76 degrees and not a cloud in the sky! We had 126 golfers in attendance and raised over $10,000. We began the day with Pickles Plus providing us a box sandwich lunch, which was delish! Once the announcements were made, National Anthem was sung, the players were on their way! 

Add a comment
Read more: 9th Annual Anytime Fitness Charity Golf Scramble

FA Hangouts - January 2017

jan17hangouts smallThe FARA Ambassador Program presents an FA Hangout talking about: FA and sleep. Does having FA impact your sleep? If so, how do you manage? Have you had a sleep study? Let's talk about ways we can help each other make sleeping much better!

At FA hangouts: we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every hangout is open to anyone with FA and a translator if needed for hearing or speech difficulties.

When: Hangouts will be held Tuesday January 24th, Wednesday January 25th, and Thursday January 26th (mark your calendars, FA Hangouts will be the last Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST all three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately all our hangouts have been filling up. If you signed up and can’t make it, please let us know so we can give the slot to someone else.

An email will go out (at the latest) 30 minutes prior to your assigned time with a link to join the Hangout. Feel free to come early for a pre-hang. We will open the hangout room 15 minutes early, but the topic conversations will begin at the top of the hour.

See you soon!

Add a comment

Alyx Holliday

AlyxHHello everyone, my name is Alyx Holliday. I was diagnosed with FA when I was five, so I don’t remember much about it. My mom said it’s a good thing I don’t remember much because what I had to go through was a lot. When I was younger I used to play baseball. I played for 17 seasons I was 14 years old when I had to stop to have the spinal fusion surgery I’m sure some of you have had it too. My adaptive P.E. teacher and my physical therapist taught me a lot of great ways to keep myself strong for all the upcoming trials.

My senior year I decided to get more involved, so I did the Mr. Salem Pageant. I had to learn two dance routines and I had to come up with a talent, so I decided to do a comedy routine. In June I went to prom and had a grand time dancing the night away. I learned that I really love to dance. Also in June I graduated with honors from my High School and I got to walk across the stage.  Add a comment

Read more: Alyx Holliday

Sean Mazeres

Hi, my name is Sean Mazeres. I am 23 years old and I was diagnosed with Freidriech’s Ataxia in 2009. I was 16 years old when I found out the devastating results. To hear, at that age, that this disease was pretty much a death sentence, was extremely hard to process and get through. With the support of my family and some of my friends I was able to get by. The low times were very low but the high times have been amazing and such a blessing. I definitely have had my fair share of bad days, also though, my good days.
Add a comment
Read more: Sean Mazeres

Preston Lynch

 

Hey, my name is Preston Lynch. I’m 22 years old from south Texas. I am currently in college to be a junior high math teacher, and then I might go for my masters to teach college. I’m usually on the go. I have school, physical therapy, and a lot of homework to keep me busy. When I do I have a moment to rest I enjoy being with people who can make me laugh and I travel often, I just got back from a cruise to Mexico. The way I work out is at physical therapy, I got for 2 days a week in the school year and 3 days a week in the summer, but each visit is about 4 hours and I’m exhausted every time I leave the clinic.

Add a comment
Read more: Preston Lynch
Page 1 of 7

SHARE

FacebookTwitterLinkedinShare on Google+
Event C.jpg