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January 13, 2012

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January 13, 2012

My daughter was diagnosed when she was very very young. It was the most devasting news in the world. When I found out about FARA, I was thrilled and delighted that someone was reaching out to the scientific community at large, and also that we, as parents, would be able to make a difference through fundraising. FARA has brought us a sense of relief knowing that this professional organization has the ability to meet with other professionals and move forward toward a treatment and a cure. Other organizations look at FARA in awe and ask how FARA has accomplished so much in such a short amount of time. Dedication is the answer!! FARA is a team of dedicated individuals who will NOT stop until we nail this disease!!

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

October 9, 2009

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October 9, 2009

When my son was born in 1996, it was the most awe-inspiring moment of my life. Holding this little boy, WOW, really changed my life in ways I had yet to discover. His birth and developments were normal; however, his balance and falling were becoming more pronounced with each passing day. Long story short, when he was 6 years old, he was diagnosed with a rare disease that I had never heard of called Friedreich’s Ataxia. I remember asking the doctor, “so what’s the treatment and how will it impact his life?” I wasn’t quite ready for the answer: there is no treatment or cure, and it will cause him to have a premature death. My family was in a grief-stricken fog for several months. Slowly, we realized that our son was still alive; hence, we started having the time of our lives and fighting this with everything we have got. I had spent a lot of time with computers so the internet was no stranger to me so finding the Friedreich’s Ataxia parent support group was relatively easy. From there we found this organization called Friedreich’s Ataxia Research Alliance (FARA). At first FARA wasn’t important, it was just a small organization doing basic research. We knew there were a lot of big organizations doing research and running clinics. Well, little did we know how far from the truth that was. I have always supported charities but am careful of how the money is spent. So after some research learning about missions, resources, and administrative cost ratios, we decided to do our first fundraiser for FARA. The fundraiser was a big success, and we started to be more involved with FARA, working towards raising more funds. The organization had some clear-cut goals: slow the progression, stop the progression, and cure the disease. They had some amazing scientists that worked with FARA to form a program that would promote science and advance the research. The funding cycles are open-ended. Why is that important? As a scientist, if I have a research concept that would benefit FA research, the first thing I would need is pilot data, and then I could apply to the NIH for funding. Basically, this process could take up to several years. With an open-ended submission and FARA’s commitment to a 60-day review process of the grants, FARA keeps the research moving as quickly as possible.. FARA also bridges the gap among researchers. Research is a very competitive market generating lots of secrets and hidden data. So imagine how impressive it is to bring dozens of researchers from around the world to sit down and discuss their FA research. FARA has done just that. FARA has grown over the years. Yet their goals remain the same. Each child that has FA is FARA’s motivation and driving force. FARA has also collaborated with other amazing organizations like MDA and NAF to fund grants and keep FA research moving.. Imagine the FA parents’ surprise when the first research drug became available and was hindered because there were no uniform rating scales for FA. Because of FARA, our children are now enrolled in clinics where dedicated researchers track the progression of their disease, providing critical data for current and future clinical trials. FARA’s weakness is not having enough money to really advance all the science and clinical trials. Hopefully, this is something that can grow with FARA’s need. They have researchers across the world… so the sun never sets on their research efforts. They will CURE FA.

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The Great!

I've personally experienced the results of this organization in...

Our son attends the clinical signs clinic where the current research is updated, and he is on one of research compound which seems to be helping his heart.

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What I've enjoyed the most about my experience with this nonprofit is...

Their well thought out mission plan and research funding concepts.

The kinds of staff and volunteers that I met were...

Amazing! The staff is truly compassionate, knowledgeable, and committed to finding a Cure for FA.

If this organization had 10 million bucks, it could...

It could fund more clinical trials and research project. Their goal is to find a cure for children who have FA, not to find the next drug that will make them billions of dollars.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

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