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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!


 

Pictures of HOPE

RareBirdPhoto1The young lady in these images is my 10 year old friend Anna. I really hope that you all have an Anna in your life. I have known Anna for a few years now and there are a lot of adjectives I could use to describe her. I think the best one, the all inclusive one, is kind. Her heart is kind, her actions are kind, and she emanates kindness, just having her around makes you feel good. Last year Anna was .diagnosed with Friedreich's Ataxia (FA), a rare and degenerative disorder. The news of such a diagnosis would bring anyone to their knees and pray for hope.

I wanted to help and provide hope for Anna and others suffering from FA and I wanted others to help too. I told people "Let’s do something good, together. I will provide the art, you can provide the kindness. If Anna can plant kindness into our world every day, so can we." 

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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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