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FARAFARA Cure FA

HOPE

Hope. Hope is a small, four letter word that has great meaning behind it. Within the past few months of participating in the FARA Ambassador Program and being actively involved in the FA Community, I have developed a new light of faith and gratefulness through hope! In April, I was fortunate enough to participate in a clinical trial at the Children’s Hospital of Philadelphia (CHOP) and in May, my family hosted our 2nd Annual 5K Race for Christina! It’s the “grassroots” events like these that give FARA and the FA community the opportunity to raise awareness and funds to participate in research to help find a cure!


FARA has a patient registry that allows one to submit their information to be eligible for upcoming research and clinical trials. I suggest everyone registers if you haven’t done so already! You can find the registry here. I met the requirements for the VP 20629 trial, which required a hospital stay to evaluate the dosage and safety of this drug.


There are two phases of the study and drug, but I only acted in the first. The first phase consists of a three day visit to the hospital, which included one dose of the drug. The second phase is a ten day visit to the hospital, which includes multiple doses of the drug. I was also asked to complete the second phase, but since I would need to be in the hospital for ten days, it would be impossible to request the time off with work. I was grateful that my job has been very accommodating and understanding with me taking time off for my three day hospital stay!


My mom and I arrived to the hospital on Monday where I was asked questions regarding taking to the test before being placed into the hospital. Tuesday was the busiest day of all due to waking up at 7am to take the drug and a collection of blood draws, urine collections and EKG heart tests all within twelve hours. Wednesday wasn’t as extensive, but was still a full morning of testing. And by Thursday, I departed from the hospital. I am very happy I was given this opportunity to help the FA Community in any way I can!


The reason why these clinical trials take place is from all the awareness and funds raised at everyone’s community events. These community events help FARA get to where they are today. My family and I just hosted our 2nd Annual 5K Race for Christina this past Mother’s Day to walk, run or roll to benefit FARA and all those who suffer from Friedreich’s Ataxia. Our goal was to raise awareness and an amount of $15,000! So many family and friends came out to support and we raised $13,134.50! It can be emotional to see who is behind you every step of the way, but my family couldn’t be more blessed and grateful!


The weather was gorgeous on May 11th and we had another great turnout! My family and I couldn’t have asked for a better day. The race was early enough in the morning in case people had plans for Mother’s Day. What really made the day more special is that the FARA board came out to support! This was great because Kyle Bryant gave a speech and got to share his story living with FA and information about the research alliance group. With both of our stories combined, it was helpful for the people to better understand the disease and how important it is to have these events.


So whenever I look back on this day or any of the other events hosted, I think of the word hope. Hope gives us the courage to believe there will be a cure for Friedreich’s Ataxia soon enough! My family is planning on hosting our 3rd Annual Race for Christina on Mother’s Day next year, so save the date! Every step made is one step closer to a cure!
Christina

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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