Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Iowa City FA Conference

On Friday, May 1, 2015 FARA hosted it's first FA Conference in Iowa City. There were 14 individuals with FA and their families in attendance. Families traveled from several states in the Mid-West to attend the conference.  

Horizon Pharmaceuticals is developing a treatment for FA. Before the conference, a group of people with FA attended a focus group to see what challenges we had in taking the drug. This medication has to be injected. The thought of injecting a needle into my own arm is scary to me, but the hope of a cure overshadows my fear.

Jennifer Farmer started the conference by giving everyone an overview of FA.  Every time I hear her speak, I learn more about FA. She also told us about ongoing clinical trials and the need for people with FA to be enrolled in the patient registry. 

The conference also included a representative from MDA, a summary of Actimmune phrase 3 trial, and Q&A with Dr. Kathy Matthews from the University of Iowa. Emily Young, a college student living with FA, spoke about her life and how she overcomes challenges. Evelyn Wu did a wonderful job organizing this event. Everyone left with a greater knowledge of FA. 

The reception that followed the conference was the highlight of the day. Not only did we enjoy a yummy dinner, we also got to meet several families in our area that know the challenges of FA but are as hopeful for a cure. 

-Andrea Kiess

My husband, Dana and I were able to participate in the Horizon Pharmaceutical focus group that was held prior to the meeting.  The purpose of the focus group was to see if the method of drug administration for Actimmune would be feasible for caretakers and people with FA.  Many of us were given a vial containing a placebo and a couple of syringes.  One was filled with saline and the other was for administering the drug.  We were also given an orange to "practice on".  As I sat in my chair holding a syringe in my hand (even though it was filled with saline) I couldn't help but feel a sense of profound hopefulness that an approved treatment for FA is not only possible, but probable.  This would not happen without FARA! 

Our son, Hayden was diagnosed on May 3, 2012.  Three years ago...At that time I couldn't even picture a treatment...let alone a cure. The syringe I held in my hand was a symbol of "this is REAL"...we are close!  Words alone can not describe the feeling that flooded my heart at that moment.

THANK YOU to Jen & Evelyn for making the trip to Iowa.  My family and I enjoyed meeting you and appreciate your openness and willingness to talk with us. With Jen, Ron & people like Evelyn on our side, we have the best possible chance at curing FA!  There are very few organizations that are as well managed and effective as FARA.  Having a child with FA, we feel blessed to have the FARA team working so diligently to find a cure.  Together we WILL cure FA!! (Right, Ron!!  :-)

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are 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.
 
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.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
Science B.jpg

 

Archived in
  the Ambassador Blog