Dear Newly Diagnosed FA Family,
Although the circumstances of our meeting are unfortunate, as we don't want any more individuals and families diagnosed with Friedreich's Ataxia (FA), we are glad that you have found the Friedreich's Ataxia Research Alliance (FARA).
We understand that this is an overwhelming time experiencing the emotions of a new diagnosis and trying to determine next steps. We hope there is comfort in knowing you are not alone. The FA Community is an active and supportive one.
FARA has created this packet to offer you both educational and support resources. The first sheet offers you an outline of available online resources and next steps. These resources will help you learn about Friedreich's ataxia (FA), navigate appointments for your loved one's medical care, and understand the research landscape. Whether you prefer to read about FA on your own or wish to meet other parents or people living with FA in the community, you will find that information and ways to connect here.
FARA was founded by patient families and FA scientists to fund and facilitate research with the goal of achieving meaningful treatments and a cure for FA. As you will see from the treatment pipeline image, there is a significant amount of research in progress. A collaborative approach to research has accelerated what we understand about FA, and this knowledge is being applied to the discovery and development of treatment approaches. We owe a great deal of what we know about FA not only to a hard-working scientific community but also to a devoted patient community, who share their voices and experiences, fundraise, and volunteer for research studies and clinical trials.
As you read through this information and develop questions, please do not hesitate to contact us in the FARA office at (484) 879-6160. We look forward to meeting you in person. We truly believe - Together, we will cure FA.
|Jen Farmer||Ron Bartek|
|Chief Executive Officer||President & Co-Founder|
Letter from Raychel Bartek, Co‑Founder of FARA and FA Parent