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FARAFARA Cure FA

2017 Global Genes RARE Patient Advocacy Summit

2017GlobalGenes 1I was excited to go to my first event as an ambassador for FARA. Coming up to Irvine from San Diego only took about an hour and a half driving. I went with my sister so she got to experience this wonderful event with me.

On the first day we went to every single booth to introduce ourselves and find out what they are doing for rare diseases. I hadn't heard of any of these diseases before this event. They showed us how they are helping rare diseases. Some of them were about finding a way to treat these diseases, and eventually find a cure. Some were about the different ways to find a genetic diagnosis. And there were some about living your life despite your situation.

After learning about the different booths, we went to the Expos. Where they would talk about what they are doing in drug development and some people were talking about how they live their life despite a rare disease. Those were the most appealing to me because some of these people had a unique case from where they are the only one in the world with that rare disease because they have no hope they have to live the best life that they can. 

2017GlobalGenes 2The second day was a bit shorter. We got to the hotel with the event at 10 in the morning. We came back to a couple of the booths, then we went to watch a couple of the Expos. The closing remarks were at 2, and that was perfect because we had to avoid the traffic to San Diego.

I learned so much information about rare diseases that I never knew about. Global Genes really made a great event. There are a lot of work being done on rare diseases, talking to the people that work on the rare diseases made me more hopeful than I already was. I already knew that life was precious and we must live it to the best of our abilities. Hearing it from other people who have rare diseases reassured my sense of living.

Bringing my sister was cool because she understood my way of living through others. The greatest takeaway from the event was the story of We Carry Kevan, which is about a guy with a rare form of muscular dystrophy and his friends who carry him in a backpack throughout Europe. The documentary was about 20 minutes and it showed his fight and willingness to not give up in life. This is a trailer of it: https://youtu.be/rKVczUU5urY

Overall, I loved this event. Especially since it was my first as an ambassador. I had people tell me that I am part of a great organization in FARA. And a couple of them even knew Ron. We are lucky to be a part of such a great organization who do great research for this rare disease, and keep our hope alive.

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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.

 

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