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!


 

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.

Add a comment
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!

Add a comment

A Time to Connect, Share, Learn and HOPE

The Bidichandani research lab, located at the University of Oklahoma Health Sciences Center (OU HSC) in Oklahoma City (OKC) hosted the first outing of the “OK FAers” group. This group is comprised of Oklahomans that have had a diagnosis of FA, most of whom have connected via FARA. The attending group members and their family members toured the laboratory where promising research is being accomplished to stop the progression of Friedrich’s Ataxia (FA).

OKC Lab Tour

Prior to the tour the FA families met for lunch and a chance to socialize. “The opportunity to connect is the purpose of this outing.”, explained FARA ambassador, Christin Haun. “Meeting each other, sharing experiences of FA, and learning about current research efforts fosters a sense of community and hope.” On arrival at the lab, guests were greeted by Dr. Sanjay Bidichandani who not only directs the activities of the lab, but is an active advisor and FARA supporter. Joining Dr. Bidichandani from the lab was two of his researchers, Dr. Yogesh Chutake (post-doctoral fellow) and Ms. Layne Rodden (PhD student).  

Add a comment
Read more: A Time to Connect, Share, Learn and HOPE

2016 Century 21 Charity Golf Tournament

2016Century21GolfOn September 22nd, 2016, Josh Lamascus and his family held the 7th annual Century 21 Charity Golf Tournament benefitting FARA, in Fontana, California. Josh explains, “when I was diagnosed, we were hit with a wave of emotion and we didn’t know what to do. My dad called our family friend, Julio Cardenas. Julio runs a Century 21 office in Rancho Cucamonga, California, and they had held an annual golf fundraiser. My dad asked Julio if he would be willing to change the beneficiary of the golf tournament to FARA. Julio happily obliged and that’s how we ended up here.”  Add a comment

Read more: 2016 Century 21 Charity Golf Tournament

5th Annual Slim's Journey

2016SlimsJourneySlim's Journey ~ A Journey of Hope

September 24, 2016 marked the 5th annual Slim's Journey: FARA 5K Run/2.5K Walk. This year was a significant year for us because we have been able to host this event with continued interest and support from our community, we have reached a $100,000 fund raising milestone, and 2016 was our highest fundraising year to date with over $26,000 raised. 

Although through this event we raise money for FARA and awareness of Friedreich's Ataxia, our event is about hope. Our hope comes from the knowledge that Jesus Christ is our Lord and Savior and through His sacrifice, we can all have eternal life. We all endure suffering of some kind but knowing we all have the option to press into our Heavenly Father is what we want to share with our participants. Each year, we include a scripture of hope on our event shirt. This year, our scripture was Romans 5:3-4 ~ "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." Sharing this message is of utmost importance to our family and serves as a reminder that this world is just temporary. Something much better waits for us.

juliemyerscommunitysignatur

Add a comment
Page 9 of 64

SHARE

FacebookTwitterLinkedinShare on Google+
Family A.jpg

 

Archived in
  the Ambassador Blog