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FARAFARA Cure FA

Pfizer and FARA: Rare Disease Community Outreach

On September 9, 2014, FARA was invited to visit Pfizer as part of their Rare Disease Community Outreach Program. I was lucky enough to be asked to participate on FARA’s behalf and share my personal stories about Friedreich’s Ataxia (FA) and the impact the disease has had on both my life and my family. Pfizer is one of the largest pharmaceutical companies in the world; they have committed to drug discovery in FA and they and we are hopeful that those discoveries will be part of the treatments that will someday lead to a cure!

 

The event at the Pfizer offices, which are located in Cambridge, MA, was delightful to participate in. There were seventy to eighty Pfizer employees, three individuals living with FA, their families, and several members of the FARA team! Jen Farmer was there to share about FARA's role in helping the process move as quickly as possible, and Pfizer shared about their approach to treating FA. There were neurologists, biologists, and chemists all present to listen to personal stories of living with this disease. The Pfizer employees were eager to listen and learn about what this disease could do to a persons body and life.

After sharing personal stories, the format changed from presentations to question and answer. I was very impressed with the thoughtful questions that some of the scientists came up with! They were truly intrigued with our honest answers and I think this sharing opportunity was beneficial for them and possibly pushed them a little harder to find an appropriate drug, to be able to give us some answers! Through this event, the scientists, chemists, and biologists who are so dedicated to developing a drug, were able to “put a face” on this disease which I believe will motivate them to do more :) In addition to our presentations and discussions we also tried an FA simulation, FARA had large welding gloves on hand for everyone and Kyle asked everyone to write a sentence on paper "This is what my handwriting might look like if I had Friedreich's ataxia." Also, Jen Farmer brought the dreaded pegboard and challenged the attendees to try the timed pegboard test with the welding gloves on. Many participants remarked that these tasks were really difficult because they could not feel anything through those gloves.

I am truly thankful for the opportunity to participate in such a meaningful event. After leaving Pfizer I have that much more respect for all of the hard work that is being done and hope for one day to live a normal life! Pfizer is doing an unbelievable job and are dedicated to ending this for all of us, and I think it would be beneficial to show our support and encouragement through social media or writing them a little thank you. We need everyone to work together in order to create the outcome that we all desire.

Rare Disease Research Unit Pfizer Inc 610 Main Street Cambridge, MA 02139 Twitter: @pfizer Facebook: www.facebook.com/Pfizer

Jamie

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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