congenital muscle disease tissue repository (cmd-tr) newsletter 2014-12-30

8/10/2019 Congenital Muscle Disease Tissue Repository (CMD-TR) Newsletter 2014-12-30

http://slidepdf.com/reader/full/congenital-muscle-disease-tissue-repository-cmd-tr-newsletter-2014-12-30 1/5

December ‘14 Issue

The year in review & current

stats

Centralizing tissue

Family visitors to the CMD-TR

Get Counted campaign

Supporters

Stacy Cossette, CMD-TR Manager

Welcome to the CMD-TRWith a vision and a committed team, we launched the Congenital

Muscle Disease Tissue Repository (CMD-TR) in May of 2013 and

have grown more rapidly than expected. The CMD-TR

specializes in centralizing tissue samples from most subtypes of

congenital muscle diseases to make these specimens available

to scientists to help accelerate treatment discovery.

Exceeding Goals

While we projected to enroll and collect tissue from 5 to 10

participants during our first year, we have exceeded our goals

with 40 enrolled and 19 unique tissue donors that have

contributed over 60 muscle specimens and 56 other tissue

specimens. We have also developed cell lines on 4 unique donor

subtypes.

Northwind Traders Newsletter May 2 16

CMD-TR is now accepting tissue

donations from most English-speaking

regions of the world with plans to include

Spanish next.

Banked Tissue Subtypes Represented at the

CMD-TR

NM MTM αDGP CMD NOS CNM



The CMD-TR Preserves Your Tissue Specimens

The Congenital Muscle Disease Tissue Repository (CMD-TR) at The Medical College of Wisconsin

is a place to store body tissues that are donated after diagnostic testing is complete, through routinesurgery, or at autopsy. These tissues are useful to the world’s leading scientists to accelerate

treatment discovery. Centralizing tissue access will make it easier for scientists to obtain appropriate

numbers of samples for research efforts.

For a list of all muscle disorder subtypes centralized at the CMD-TR, please visit our partner website

of the Congenital Muscle Disease International Registry at www.cmdir.org. While there, please

register with the subtype you or your loved one has, if you have not already done so. Tutorials are

available to help walk you through the registration process and completing the initial questionnaire.

Please email [email protected] with any questions and to receive help getting registered.

CMD-TR Personnel and Special Guests

http://www.cmdir.org/


mailto:[email protected]






Look for our

announcements

on the muscle

disorder family

support

Facebook pages

in 2015!

Get Counted!Get Counted! is a community initiative that began in response to identified needs

for more accessible information and greater access to patient tissue for research.

We had the infrastructure in place to answer these needs but the CMD

communities lacked awareness of these resources and the benefit to supporting

them.

Get Ready for Get Consented! In early 2015, we will launch the next objective in this campaign. “Get Consented!”

encourages people to consent for tissue donation with the CMD-TR. To find out

how you can help encourage people in your muscle disorder community to

participate, please contact the CMD-TR manager, Stacy Cossette.

Lawlor Laboratory Key Personnel: Jenny Tinklenberg, Stacy Cossette, Michael Lawlor, Hui Meng






Support for the CMD-TR has been generously provided by:

Cure CMD, A Foundation Building Strength for Nemaline

Myopathy (AFBS), Where There’s a Will There’s a Cure, the

Joshua Frase Foundation; (JFF), the Foye, Rutkowski, andScoggins families, the Children’s Hospital of Wisconsin

Foundation, and the Children’s Research Institute .

Pictured above from left to right: Sarah Foye is one of our CMD-TR Family Liaisons,Stacy Cossette is the Repository’s Manager, and Dr. Michael Lawlor is the

Repository’s Director.

congenital muscle disease tissue repository (cmd-tr) newsletter 2014-12-30

Documents