Thank You!

Thank YouI want to thank the members of HopeNET’s Medical Advisory Board, Dr. Fasano, Dr. Louis, Dr. Nahab, Dr. Testa, Dr. Vaillancourt & Deb Zeller, for their invaluable guidance in 2015. Their assistance has been very helpful.

I would also like to thank the following – Charlene Aldrich, Dr. Elbe, Dr. Gwinn, Dr. Halperin, Dr. Haubenberger, Dr. Lowell, Dr. Maguire-Zeiss, Dr. Van’t Veer, & Dr. Vasaitis. They also provided invaluable guidance & assistance.

In 2016, I look forward to continue to work with them..

Peter Muller
Executive Director, HopeNet

The Family Study of Essential Tremor

Bar graphDr. Elan Louis and colleagues at Yale University along with Dr. Lorraine Clark at Columbia University have teamed together for an important research “FASET II”, to try to identify the genes that are responsible for ET. They are calling on the assistance of the ET community to help them complete this groundbreaking research, which at the moment is the largest NIH-funded project of its kind. The help of the ET community is vital.

Eligible families would comply with the following criteria:

  1. There are at least 3 affected family members and at least 2 unaffected family members. Each family has at least 5 individuals willing to participate.
  2. One person in your family has been diagnosed by a doctor as having ET (rather than dystonia or Parkinson’s disease, for example).
  3. Your tremor had started by the time you were 50 years old.
  4. Two of your affected relatives, are living and also do not have any accompanying dystonia or Parkinson’s disease. (they do not have to have an official diagnosis)
  5. You have at least two relatives that do not have any ET.
  6. You think you and your family members are willing to donate a blood sample, answer some questionnaires and undergo a videotaped neurological exam during a home visit that will take place in each of your homes. Each interview will last approximate 2-3 hours.
  7. This is a nationwide study, in which the researchers will travel to meet with qualified participants individually. There are no costs associated with your participation and we work around your available schedule. If you are interested, call 203.737.1013 or email tremorgenetics@yale.edu

Meals on Wheels

Sandwich cut in halfMy shaky hands make it increasingly tough for me to prepare my own meals, and I was startled when a friend suggested an obvious source of help – Meals-on-Wheels. They now deliver two meals at about 11am every day except weekends, and I pay them monthly what amounts to about $4 per day. What do I get? An entree with two vegetables wrapped in a tray and aluminum foil that I transfer to a dinner plate and microwave, and a nice sandwich saran wrapped to preserve its freshness. Add to that a container of skim milk, a roll and butter, a dessert, fruit, and sometimes a mixed salad and dressing. The wonderful friendly people who deliver are also a daily check on the well-being of my aging self. How did I get started? I went on-line and was referred to the local chapter. When I told the pleasant receptionist about how my shakes often caused much of my meals to end up on the floor (you know about that) and that I take a blood thinner that makes using knives a potentially bloody experience, she was happy to sign me up for Meals-on-Wheels, and my deliveries started the next day. It’s been a great help and I am most grateful to them.

Walter Ebmeyer

http://www.mealsonwheelsamerica.org/