Month: March 2012

Warrior

I had a refreshing weekend. I drove 3 hours to Long Island, NY to visit my friend Tess and we caught up while doing activities like sitting in the Sauna, and getting painfully satisfying massages. Tess is a Yoga instructor so I took her class this morning. Many of the Yoga postures require balance so Read More …

Awareness Videos

Today I had the fortunate opportunity to shoot a few FARA awareness videos with three great American Tennis players; James Blake, Thomas Blake, and John Isner. We talked about why FARA is so confident that we will find a treatment and a cure – because we know, in detail, the underlying cause of the disease. Read More …

8th Annual Catrike Rally

Each year Catrike invites all their loyal fans to come out and show off their tricked out rides and enjoy each other’s company.  The 8th annual Rally was yesterday. The day started with a gathering of over 200 Catrikes for a ride on the West Orange Trail from Winter Garden to Clermont, FL and back.  I am Read More …

The Role of the FA patient

Ron and I went to an all day symposium at the FDA today. We heard from several different departments within the FDA and we also had time to network with other patient advocacy organizations. One of the recurring themes today was the extreme importance of involvement of the patient community.  Most of us patients visit Read More …

Rare Disease Day

Today Ron Bartek (President of FARA) and I attended an all day symposium at the National Institutes of Health (NIH) in celebration of Rare Disease Day.  Friedreich’s ataxia (FA) is a rare disease with an incidence of 1 in 50,000 (about 6,000 in the US).  However there are many people living with some form of Read More …