May 2016

Northwind Traders Newsletter

Welcome to the CMD-TR

With 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.

December 14 Issue

The year in review & current

stats

Centralizing tissue

Family visitors to the CMD-TR

Exceeding Goals

Get Counted campaign

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.

Supporters

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

Stacy Cossette, CMD-TR Manager

MTM

DGP

CMD NOS

CNM

CMD-TR Personnel and Special Guests

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 routine
surgery, or at autopsy. These tissues are useful to the worlds 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 counselor@cmdir.org with any questions and to receive help getting registered.

Meet and Greet

Event at the CMD
Tissue Repository
In October of 2014, the CMDTR hosted a meet-and-greet
event for local supporters of
the Tissue Repository.
During this family-friendly
gathering, guests had a
chance to see our facility,
meet the team, and learn
what we do.
Our guests got a hands-on
experience that included a
tour of the laboratory and
viewing actual muscle
specimens using a dual-head
microscope.
Dr. Michael Lawlor, the
Director of the CMD-TR, is
leading and collaborating on
several muscle disease
research studies. He was
able to provide an update on
some of those projects for
our guests.
This proved to be a
remarkable experience for
the researchers and families
to learn more about how we
can help each other to
achieve treatment discovery
goals. Together we can
accomplish so much more!
A warm thank you to
everyone involved. Your
participation and generous
contributions to the CMD-TR
will help get us to treatments
sooner.

Dr. Michael Lawlor and a special guest viewing muscle

specimens together at the CMD-TR

Learning about muscle biopsies and treatment strategies at

the CMD-TR event

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.

Look for our

announcements
on the muscle
disorder family
support
Facebook pages
in 2015!

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 Theres a Will Theres a Cure, the
Joshua Frase Foundation; (JFF), the Foye, Rutkowski, and
Scoggins families, the Childrens Hospital of Wisconsin
Foundation, and the Childrens Research Institute .

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