Upcoming Events

  MD Center Spring 2012 Educational Series: 

Tuesdays- March 13th, April 17th & May 8th

6-7:30pm, 717 Delaware Building,

F R E E   P A R K I N G ! !

Click here for Series Brochure and additional information.

Directions to Educational Series (click here)

Ongoing Study Recruitment and Support Group Information below:

  Children and Adults Needed for Myotonic MRI Study

Our MD Center is conducting an NIH study of brain structure and function changes in myotonic dystrophy types 1 and 2 (DM1 and DM2). Participants have a brain MRI, neuropsychological tests (games to see how you learn and remember) and donate blood and skin samples. It may require 1-2 nights in the Twin Cities, but funding is available for travel.

We are eager for all children (8-18y) and adults (25-45y) with DM1 or DM2 to participate; for more information, or to sign up, contact:

Cameron Naughton:

Office: 612-625-4882
E-Mail: naug0009@umn.edu , if:

You have DM1 or DM2, are 25 to 45 years of age, and are interested in the study
Your affected children, 8 to 18 years, can come to MN for the study
You want to register with the National Registry - all DM families are encouraged
We also greatly appreciate DM1 and DM2 tissue donations.

Let Cameron know if any of the following occur, and we can help work out logistics - ideally all of these are planned ahead of time, but contact us with any questions:

• A DM1 or DM2 individual has a biopsy with tissue remaining to donate
• A DM1 or DM2 individual is to have surgery that will generate tissue to donate
• A DM1 or DM2 individuals is planning to donate their remains after death

MD Center Support Groups

MDA ALS Support Group
The MDA offers a support group for ALS patients, their caregivers, family and friends.  The first hour features a speaker relating to ALS issues or open discussion as a large group.  The second half features breakout sessions or PALS (persons with ALS), caregivers, spouses, family and friends.  This group meets on the second Tuesday of each month from 12:30-2:30 PM on the 12th floor of the Philips Wangensteen Building. For questions or more information, please contact Gina at MDA (gadolphson@mdausa.org or 952.697.3251).

MDA ALS Youth Support Group
The MDA offers a support group for the children and grandchildren of those persons diagnosed with ALS.  The support group meets on the third Thursday of each month from 4:30-6 PM and is designed for youth ages 10-17.  The group takes place in Room# 303 in the U of MN 717 Delaware Building.  For questions or more information, please contact Gina at MDA (gadolphson@mdausa.org or 952.697.3251).

MD Center Duchenne & Becker Support Group
The Duchenne and Becker support group is designed for young men ages 13-23 years old and their parents.  The group takes place on the last Tuesday of every other month from 5-6:30pm, in Room#303 of the 717 Delaware Building on the U of MN campus.  For questions or more information contact Kelly Schuna, MD Center Community Liaison (kschuna@umn.edu or 612-626-4823).


MD Center Neuromuscular Family Network
Please join us for a new group for children living with neuromuscular disease, birth -12yrs of age, and their parents. Parents will participate in a discussion group while children living with neuromuscular disease swim in Shriner’s therapeutic pool.  U of MN PT students will be in the pool for children who need one to one supervision.  For questions or more information contact Kelly Schuna, MD Center Community Liaison (at 612-626-4823 or kschuna@umn.edu ).

 

MD Center Siblings Like Me
The Siblings Like Me Group is a time to celebrate siblings of kids with neuromuscular disease and create an opportunity for siblings to meet other kids with similar situations surrounding them. This group is designed for siblings 6-12 years of age.  This group meets quarterly from 10:30 AM—12:30 PM at the Rhondo Community Outreach Library, 461 Dale Street North, St. Paul, MN 55103. Meet in Community Room just inside of main entrance.  For questions or more information, please contact Kelly Schuna, MD Center Community Liaison (kschuna@umn.edu or 612-626-4823).