Monday, October 24, 2011

5th International Dystonia Symposium

The 5th International Dystonia Symposium came to an end in the early evening on Saturday, October 22nd. A theme throughout the three day meeting was overhearing someone say, “This is the best dystonia meeting I have ever attended.” Kudos to the Scientific and Program Committee members – Alberto Albanese, Mahlon DeLong, Wendy Galpern, Mark Hallett, Buz Jinnah, Ryuji Kaji, Christine Klein, Tony Lang, Jan Teller, Marie Vidailhet and Tom Warner – who worked so hard in putting together this fabulous program. 560 people attended the symposium and were able to experience the energy that can be felt in this field. The discussions and ideas generated during the meeting are exciting. DMRF members should be proud of the numerous researchers who cited the support of the DMRF for the work they presented. A summary of the meeting will be issued shortly but you all should know that this was a resounding success and everyone left really motivated to keep the progress continuing!

Thursday, October 13, 2011

School is in Session

The school year is well into full-swing across the country. Schedules fill quickly each week with homework assignments, after school clubs, and last-minute revelations from your child that he needs 50 homemade brownies and a made-to-scale diorama of Mount Rushmore for school the next day. Parents of children with dystonia have added challenges and decisions to make about how to ensure their students have the best year possible, let alone how to get through the week. It takes added vigilance to make sure a child with physical challenges is being served appropriately by the education system.

The DMRF is proud to partner with long-time member and special education expert Roberta Senzel, Esq. and offer a new blog entitled "Dystonia & Special Education" at The purpose of the blog is to help parents of dystonia-affected children navigate the education system and have access to practical, essential information. Roberta is not only a special education attorney and university school law instructor, she is also the mother of a grown child with dystonia. Roberta knows what it is like when dystonia invades a family, and she also knows what it takes to help affected children succeed and thrive in school. Roberta is a frequent speaker at DMRF events—including the bi-annual Children & Family Symposium—and an active member of the Greater Washington, DC Dystonia Support Group.

Roberta will be blogging regularly on the federal education laws every parent should understand, tips for working with educators, transition after high school, and many other topics. You are welcome to submit questions and topics you would like to see Roberta address at

Many thanks to Roberta for sharing her insights and expertise, and for providing this excellent resource for the dystonia community. There are few greater gifts in this world than a talented, compassionate teacher and Roberta is just that!