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.

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!


 

FA Hangouts - April 2017

FAHangouts April17The FARA Ambassador Program presents an FA Hangout talking about: FA and finances. How do you manage the extra expenses of being disabled? How do you balance living a full life today with preparing for the future? Let others know what works for you and learn your next financial to-do. 

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 April 25th, Wednesday April 26th, and Thursday April 27th (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 ET all 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!

The FARA Ambassador Program presents an FA Hangout talking about: FA and finances. How do you manage the extra expenses of being disabled? How do you balance living a full life today with preparing for the future? Let others know what works for you and learn your next financial to-do.

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 April 25th, Wednesday April 26th, and Thursday April 27th (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 ET all 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.

 

 

 

 

 

 

Add a comment

Ambassador Program Applications 2017

Apply AP 2017FARA Ambassadors are FA patient volunteers who bridge the gap between research, patient care and awareness of Friedreich’s Ataxia. Ambassadors are positive and supportive, peer representatives for the FA community dedicating their time and effort to raise awareness and funds for FARA.

The FARA Ambassador Program (AP) meets on the first Thursday of each month via WebEx. A large contributing factor to the effectiveness and success of this program is being present and active. Planning committees and project resposibilities are determined at the meetings along with sharing of research updates and FARA news.

The AP focuses on several different projects throughout the year. Some examples include:

- Contributing posts to the Ambassador Program blog (curefa.org/ambassadors)
- Writing thank you cards to donors and organizers for FARA events
- Monthly FA Hangouts
- Speaking at fundraisers, community events, pharmaceutical/research organizations
- Fundraising
- Awareness: Rare Disease Day, FA Awareness Day, International Ataxia Awareness Day
- Communicating with newly diagnosed families
- Helping others in the FA community with their fundraising projects 

How do I get involved?

Spend some time to read the description of the program at the beginning of the application here: https://goo.gl/forms/JbjJXYnZIJ8ydznp1. Consider how the roles and responsibilities might fit in with your life and schedule. Choose the appropriate commitment level for your situation.  Then fill out the rest of the online application and click submit!  Someone from the AP Leadership will be in touch with you for the next steps.  The application deadline is Friday, May 5th.

Questions? info@curefa.org

Add a comment

FA Hangouts - March 2017

FAhangouts March2017The FARA Ambassador Program presents an FA Hangout talking about: your living situation and how/if FA has changed that. This discussion will run the gambit from the emotional to the practical. Do you live alone? With friends? With family? Does your living situation work for you? Are you supported enough? Too much? Can you get around your house independently? Etc.

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 28th, Wednesday March 29th, and Thursday March 30th (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 all 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. 

Add a comment
Read more: FA Hangouts - March 2017

Patient Perspective: Leah's Experience Participating in a Research Study

LeahAlstin1It was 2001. I had just finished year 12 and applied to do Primary School teaching at Deakin University. Life was exciting! I was moving to Geelong, not far off turning 18, getting my licence…all those fun things that happen when you finish secondary school. During year 12 I had felt a little unsteady on my feet and luckily I had a thorough doctor.

Mum received the phone call with my diagnosis of Friedreich’s Ataxia (FA) from a neurologist in Melbourne. She told me, I cried a bit, and then got on with life. I received a place at uni, I moved out of home, I got my licence, I partied hard. FA wasn’t that bad.

I attended the FA clinic at Monash Medical Centre annually until I was about 22 and then emotionally, I couldn’t do it. I would sit in the waiting room and compare myself to others, analyse every question that doctors would ask me, and then go home and cry on and off for weeks. A few times I was asked to participate in clinical trials, but I said no. I didn’t want any more to do with FA than I had to. Selfish I know, but I thought that maybe if I blocked it out, it might go away. 

Add a comment
Read more: Patient Perspective: Leah's Experience Participating in a Research Study

2017 FArm to Table

2017FarmtoTableAt the end of a wonderfully successful Farm to Table fundraising event, Ceron, the event hostess walked by and proclaimed, "I love humans." It was a fleeting moment, but Ceron is right. In my role at FARA, I get to see the best of humanity- a contagious energy that when faced with challenge surges back to meet and push against that challenge. It is an energy that shows itself in the form of a boy living with FA- Gavin- who though he falls, always gets back up. Gavin's energy inspires his Aunt Ceron and Uncle Donald to open their farm and their home to create a magical fundraising event. Ceron and Donald's generous spirit and energy draw in hardworking volunteers, talented Chefs, toiling farmers, gifted musicians, and generous supporters. This collection of awesome humans create a swell of energy in the form of over $30,000 raised for research and an overwhelming feeling that one is never alone in the face of hardship. Whenever I'm lucky enough to be in the presence of such energy, I am left awestruck and grateful. Thank you! I'll leave it to Ceron to recognize all of these awesome humans by name. ~Felicia DeRosa, FARA Program Director 

Add a comment
Read more: 2017 FArm to Table
Page 3 of 63

SHARE

FacebookTwitterLinkedinShare on Google+
Event G.jpg

 

Archived in
  the Ambassador Blog