Jackie Montes, PT, MA, NCS

It is with great pleasure that I take this opportunity to introduce our newest clinical team members here at the ALS Center. Kate Bednarz, RD, a registered dietician joined our team in July with great enthusiasm. She has embraced the nutritional challenges faced by people with ALS and eagerly works to develop strategies to counteract them. In fact, she put the doctors and entire clinical staff to a blinded taste test of all the nutritional supplements we frequently recommend to see if we could live with the recommendations we make so readily. Please see the “Wine Tasting Event” article in the “Recent Events” section on page 5.

I am also excited to introduce Gabriela Harrington, RN, BSN, clinical research nurse, who joined our team this October. Gabriela comes to us with experience in both inpatient care and clinical and patient care management. We welcome both Kate and Gabriela to our team and ALS community and are thrilled to be working together to combat ALS.

Next month the 16th Annual International Symposium on ALS/MND will take place in Dublin, Ireland. This is one of the biggest annual meetings, specific to ALS and motor neuron disease, where doctors, basic scientists and allied health professionals gather to discuss laboratory studies, clinical trials and treatment and management options. There is a strong sense of partnership and collaboration amongst all who attend. Many of our clinical team will attend this year coming home with a renewed sense of hope and momentum to continue our efforts.

Happy Holidays!

Informing children of all ages that a loved one or family member has ALS is a difficult task. Here are some suggestions to guide your discussions: Be honest—the truth is always the best policy. Information should be age appropriate using language and concepts they can understand. The MDA has a great interactive website for kids, explaining ALS in terms they can understand. http://www.march-of-faces.org/KIDS/moe1.html Discuss things in small doses — Look for verbal and physical cues from your children indicating that they have heard enough. Always remain calm and comfortable — children are very perceptive and pick up on our uneasiness. This information was adapted from www.alsindependence.com.