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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.

The Ambassador Blog

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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!


 

FA Hangouts - March 2018

FAHangouts March18 2The FARA Ambassador Program presents an FA Hangout talking about: how to stay energized with FA.

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 March 27th, Wednesday, March 28th, and Thursday, March 29th (mark your calendars, FA Hangouts will be the last consecutive Tuesday, Wednesday, and Thursday of the month, except on holidays and the like) at 8-9:30 PM EST each of the three days.

How: Email fahangouts@gmail.com to sign up or ask questions. Google (not us!) limits hangout capacity to 10 devices. 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!

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2018 FArm to Table

FArm18 1Gavin Lambert is twelve years old. He tells me that he wants to be an actor and a basketball player when he grows up. On March 3rd in Plant City, Florida, the community raised $45,000 in his honor. A farm was transformed into an elegant dining hall. Uniformed friends served a professionally prepared meal with farm-grown ingredients, and a choir performed musical favorites for guests, with Gavin seated behind them on the grass, singing along. His brother Evan sold a folder full of drawings for $500 to a generous donor.

I came as a stowaway with FARA Ambassador Lealan and her husband Daniel. Lealan had designed beautiful FArm to Table logos and programs. I took a few photographs, plated salads with an assembly line of volunteers, and auctioned off my late grandmother’s heart-shaped cream cheese cookies alongside bracelets, paintings, furniture, and an impressive array of donated items before slipping into an empty seat beside FARA’s own Felicia DeRosa. 

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Read more: 2018 FArm to Table

Patient Perspective: Kyle's Experience Participating in a Clinical Study

Clinical Study Review: Metabolism in Friedreich’s ataxia (FA)

Recently I volunteered for a study with Dr. Shana McCormack at the University of Pennsylvania (UPenn) in collaboration with The Children’s Hospital of Philadelphia (CHOP). Dr. McCormack is an “Endocrinologist”, which means that she studies the how our bodies’ hormones control various and important bodily functions, such as: sleep, metabolism of food for energy generation, our mood, our growth and development, for example.

During my participation in this study, I thought about the difference between a “clinical study”, and a “clinical trial”. Dr. McCormack was not testing a new therapy (i.e., clinical trial), but was instead studying a feature of FA with the goal of enhancing our medical knowledge of the disease (i.e., clinical study). Armed with this knowledge, clinicians and researchers are empowered to develop better treatments for FA. The natural history study, for example, is a clinical study that has greatly improved our understanding of FA disease progression, and has positively influenced how Pharma companies design FA clinical trials. Just like when I volunteer for a clinical trial, I am confident that my participation in Dr. McCormack’s clinical study is getting us closer to treatments and a cure. 

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Read more: Patient Perspective: Kyle's Experience Participating in a Clinical Study

8th Annual Pull for a Cure

8ann Pull4aCure"The 8th Annual Pull for a Cure was held on Saturday, February 10th. If you’ve never been or heard of this event, it is one you don’t want to miss! Held at Tampa Bay Sporting Clays, the day started with clay shooting on an 8 station shooting course and ended with a tasty meal catered by World of Beer. The event also featured massages, raffles, live entertainment and a craft beer & food pairing class for non-shooters!

This year there was a cowboy theme! One of our newest donation raisers this year was the ‘Paul Avery Roping Competition.’ After the raffle winners were announced, they asked who wanted to donate money and see a real cowboy, Ben Barthle, rope my dad. Of course, everyone jumped up to donate and then the roping commenced. This definitely brought a lot of laughs and a lot of funds for FARA.  Add a comment

Read more: 8th Annual Pull for a Cure

UCLA/FARA Friedreich's Ataxia Patient Symposium

On February 23, 2018, I attended the UCLA symposium on Friedreich's Ataxia put on by FARA in Torrance, California. I decided to attend this event because it was only about 230 miles from my home. Since my diagnosis in 2002, I had never actually personally met another person with FA. Needless to say, I was very excited to attend the event.

I was not disappointed. After meeting several fellow FAers, they were extremely friendly and immediately made me feel like part of the FAmily. For many years I have been wearing a mask of sorts as a coping mechanism. Putting up this front has been completely exhausting. It was a wonderful feeling to drop the mask and be completely open and honest with other FAers. It was great to discover that myself and a fellow FAer had both fallen and broken off our front teeth. We were both laughing while we were telling the story of this similar experience. Whenever I have told this story to someone without FA, they don’t quite know how to react and it becomes somewhat awkward. My tooth has been completely replaced so I think it’s a funny story. Words really can’t explain the feeling of removing the mask, even if only for one day. 

2018UCLAsymposium

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Read more: UCLA/FARA Friedreich's Ataxia Patient Symposium
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