2009 has been a year of milestones for FA research and FARA. A record number of FA clinical trials are underway and for the first time, FARA is sponsoring one of them. More than 100 scientists and FA advocates from all over the world attended our mid-year therapeutics symposium and made presentations on exciting new therapies. We received more qualified grant requests than ever before, we have the most robust research portfolio we have ever had, and FARA researchers are making exciting headway. This year, alone, seven additional pharmaceutical companies have contacted FARA to express specific interest in our work and to explore new collaboration.

    Looking ahead to 2010 and beyond, FARA faces a newexciting path to treatments and a cure. There is tremendous progress being made and growth in the scientific community's commitment to our goal. New potential therapies continue to surface and new clinical trials continue to take shape, spurred on by FARA's collaborative culture. But, with this growth of commitment and opportunity comes a heightened need for funding.

    You may be wondering, “why do we need more now?”. During FARA's first ten years, the majority of the research grants were awarded for basic, discovery research (understanding the cause/mechanism of the disease). Our typical grant amount was $25,000-$75,000. Over the past three years, we have seen change in three key areas: 1) the number of grant requests has increased; 2) the amount of money requested has increased, and 3) the type of research being proposed has changed. Nearly all of the research proposals now focus on translating and developing basic research discoveries into treatments or on clinical (human) research. Typical grant amounts now range from $100,000 to several times that amount.

    A comparison of grant activity shows that in 1999, FARA awarded two grants totaling $29,000, while by the end of 2009, FARA will have reviewed more than 40 grant requests and made more than 20 grant awards approaching $2 million in funding. In order for FARA to continue to support all of the most promising research - including research that advances potential treatments from the laboratory to patients - and to maintain our urgent pace, we must significantly increase our funding. Therefore, I would like to ask each member of the FA community to help us reach our goal, within the next three years, of $5 million annually in FARA-funded research. That is our estimate of how much will be required to cross the finish line together. FARA does not have a capital campaign or an endowment fund. This first-ever annual appeal is to inform you, our supporters, of the resources required to meet our goal. This goal is achievable only with your help.

    We recognize that we are in challenging economic times and that many of you are already donors or fundraisers. Without the generous support and leadership of FA families and friends like you, we would not be at this juncture. But, we also know how important it is to you to understand FARA's needs and how you can help.

    Your gift will have a real impact. Whether you choose to increase your personal donation, raise more funds, or move from an annual donation to a monthly giving program, you will be helping FARA take FA research to the next level. With greater funding, we will sponsor more research, enhance our network of clinics, move more treatments from the lab to patients and educate more people about FA.

    On a personal note, if you are not already doing so, you may wish to consider a monthly giving program that is directly deducted from your credit card. I intend to take this step with my personal giving. It provides the opportunity to spread out your gift amount allowing you to consider a larger gift while providing you with better control over your monthly expenses. It also will provide FARA with more even cash flow for grant allocation. Thank you all for helping to bring FARA to this pivotal place and time in our research.

Together, we will eliminate the devastation of Friedreich's Ataxia.

Warmest regards,

Ron