My name is Kelly Naranjo and I am one of the new research associates at Yale University working under Dr. Elan Louis in a new study looking at the genetics of essential tremor in families. I have been reading a bit about your efforts to increase awareness of essential tremor and it is truly remarkable, your open letter in HopeNet is especially moving. I think that for the majority of the population, it is very difficult to understand the underlying effects of any medical condition unless they themselves or a loved one suffers from it. That is why education and information is always so important and I truly applaud all your efforts.
I am reaching out to you today because I wanted to tell you a bit more about our new study. I think you might smile a bit because due in part to advocates like yourself, we have more people interested in funding research and working towards finding more information about essential tremor, its causes and in the future a cure. In the previous study FASET I- family study on essential tremor- the research team also looked at genetic factors and a lot of knowledge was gathered, such as the correlation of ages of onset of tremor in various family members. Unfortunately, because the NIH only funded the project for three years and the budget was limited it was not possible to look at unaffected family members.
I wanted to let you know that FASET II, is currently the largest ever NIH funded grant ever, working with participants suffering from essential tremor. The funding period for FASET II is five years and our budget is a lot more generous. This time around we will be collecting samples for DNA analysis for affected as well as unaffected family members. There have been some proposed affected gene loci and having DNA information for the unaffected family members will confirm if any of the proposed gene clusters is a genetic factor.
I wanted to also add that recruiting participants and their families will be a huge effort and we are asking for your help! As an ET advocate and public speaker, I was wondering if perhaps you could help us connect with your network and people who might be interested in participating in this study? I would love to speak on the phone and tell you a bit more about what exactly we are we doing and if you are interested I can even put together a publication package about the interesting findings from the previous study. Please let me know when would be a good time talk on the phone, or if email is easiest.
My contact information is:
Kelly V. Naranjo, B.A Postgraduate Research Associate
Yale School of Medicine Department of Neurology
Thank you! And I look forward to hearing from you soon.