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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!


 

Bracelets to #cureFA!

Bracelets4thecureMy original inspiration for making hand-crafted bracelets was “Holly’s Hope”, a line of bracelets created by FARA member, Holly Franz, to benefit FARA. After attending a bead show, I decided to make my bracelets from natural stone beads.

On Saturday, Nov. 5th, my family and I hosted a FARA fundraiser selling handmade bracelets and jewelry stands at a local craft show, Heart of the Crafter. All proceeds from the sale went to FARA. Family members, and a very talented and generous friend donated supplies, time, and effort to craft elastic cord, beaded bracelets.

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Knock Out FA

KnockoutFAThe first annual Knock Out FA event was held on October 16th at Detweiller Park in Peoria, IL. Knock Out FA was a very entertaining KnockerBall soccer tournament where teams of 8 competed in a bracket style tournament trying to advance to the next round. For every goal scored, each team member was awarded a raffle ticket they could place into a number of amazing raffle drawings! The final winning team was awarded a pair of Zeal sunglasses for each member of the team. 

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"Ghouls Night Out"

GhoulsNightOut“Ghouls Night Out” was the theme for this year’s Piccadilly Gala and Ladies Night Out in Clinton, Missouri. The annual event raises funds to support the downtown decorations, landscapes, etc. Each year, a charity or cause is selected to benefit as well, and this year, FARA was chosen. On Tuesday, October 11, over 300 women gathered to raise money in a big way. Thirteen pumpkins were decorated for the evenings “Pumpkin Palooza” and auctioned off. With the city’s generous women, these 13 pumpkins raised $1,800 for FARA in their efforts to find a cure. 

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ADVOCACY ALERT: United Rare Disease Day of Action for #CuresNOW

Dear friends of the FA Community,

The National Organization for Rare Disorders (NORD), in full collaboration with Global Genes and the EveryLife Foundation, has issued the Advocacy Alert below in support of the 21st Century Cures Act, which is the bill we all want congress to pass as soon as possible during the "lame duck" session that begins Tuesday, November 15. This bill contains many provisions that will help advance medical research and development, especially for rare diseases such as FA. Among those provisions are measures that would provide the NIH and FDA with the resources they need to research, develop and approve new therapies and to incentivize our bio-pharmaceutical industry partners to focus on rare diseases.

FARA encourages you to to read the excellent NORD letter, to click on its link providing you the phone numbers of your U.S. Senate and House representatives and to call the offices of your representatives right away to share your story as someone living with a rare disease for which there is no treatment and urge them to support the 21st Century Cures Act. The letter also provides some tips on how to raise awareness on this important initiative via social media.

It is very important that you do this right away because the congress has just this week and two legislative weeks in December to pass this very important bill. This is their last chance because a new congress with new members convenes in January, the 21st Century Cures Act would have to start all over again in the legislative process and some provisions very important to all of us could not be resurrected. So, please take action right away, and please share this effort with their family and friends. Thank you very much.

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Read more: ADVOCACY ALERT: United Rare Disease Day of Action for #CuresNOW

FA Hangouts - November 2016

The FARA Ambassador Program presents an FA Hangout talking about: travel tips. Being on the road with FA can come with some uncertainty and challenges. Come and talk about your experiences with airports, trains, hotels, and anything else related to being away from the familiarity of home. Listen to other people's tips and life hacks related to travel.

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.

When: (Hangouts are earlier this month because of Thanksgiving in the US.) Hangouts will be held Tuesday November 15th, Wednesday November 16th, and Thursday November 17th (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!

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