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FARAFARA Cure FA

Voyager Therapeutics Ribbon Cutting Ceremony

On October 21st I had the opportunity to go to a ribbon cutting ceremony for Voyager Therapeutics. Voyager is working on gene therapy for Friedreich’s Ataxia and a couple of other diseases of the central nervous system. I was joined at this event by my dad and another FA family. The event itself was fun: speeches and ribbon cutting followed by a tour of their place and yummy food. The Voyager staff treated us like family and kept telling us we were family. I believe them! Now they are FAmily.

These are a couple of my learnings for that night.

1) They care! This might sound like a no-brainer, but these brilliant people care about us and our families whose lives have been profoundly changed by FA. They aren’t just curious, they care. They know their work is important, they know the urgency and don’t want FA to end any more lives.

2) Local advocacy matters! One of the speakers was Dr. Windham-Bannister CEO of the Massachusetts Life Sciences Center. The Center is part of the state government. They use state funds to seed the life sciences here and use their funds to leverage private funds into the industry. They have a strategy to make the state go-to for life sciences. So, us seeing a bunch of MA firms working on FA is rising from that intent.

3) Ask away! I asked questions all night (surprise, surprise). No one got sick of my questions or me. They did their best to explain the science simply and seemed to enjoy doing so.

If you ever get the chance to connect with a scientist working on finding a cure for FA, seize it! I am pretty sure both you and the scientist will be better for it.

Jean

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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