Northwind Traders Newsletter May 2016

A Look At 2015
December ‘15 Issue
Early in the year we hosted a webinar to inform
CM and CMD families of the purpose we serve.  The Year In Review
We also launched our webpage, set-up a  Centralizing Specimens
Facebook page, translated our autopsy materials
 NYC Meet and Greet
into French and German, and held two Meet-and-
Greets—one online plus another one in New York  Get Counted
City in November.  Supporters
We increased participation at an extraordinary
rate this year. We now have 99 enrolled and 35
individual tissue donors that have contributed The CMD-TR is accepting tissue
over 220 tissue specimens. Additionally, we have donations from most English-speaking
regions of the world. Visit our website at
cell lines banked from several individual donors mcw.edu/CMDTR
representing a variety of CM and CMD subtypes.
 Hui Meng, PhD, Jennifer Tinklenberg, MS, and Stacy Cossette, MS, of the Lawlor laboratory

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 specimens that are donated after diagnostic testing is complete, through routine
surgery, or at autopsy. Centralizing tissue access will make it easier for scientists to obtain
appropriate numbers of samples for their research studies.

Our Mission: To provide a free service to patients and families interested in supporting medical
research and treatment options through tissue centralization.

Our Purpose: To make samples from congenital muscle disease (CMD) patients available for
research and treatment studies.

Our Goals: To establish a large CMD tissue collection and to distribute samples to scientists who
study muscle disease.

For a list of all muscle disorder subtypes centralized at the CMD-TR, please visit our partner website,
the Congenital Muscle Disease International Registry, at cmdir.org.
CMD Tissue
Repository Meet
-and-Greet with
Dr. Lawlor in
NYC

In November of 2015, the

CMD-TR Director, Dr.
Michael Lawlor, arranged a
Meet-&-Greet event for some
local families who are
supporters and participants.

Guests were able to attend

Dr. Lawlor’s scientific talk at
NYU and then spent some Dr. Lawlor, the CMD-TR Director, at a participant family Meet-
time talking about research and-Greet in New York City held in November
advancements in areas
relevant to their interests.

Dr. Lawlor is leading and

collaborating on several
muscle disease studies. He
was able to provide an
update on some of those Viewing muscle biopsies
projects for our guests.

This proved to be an
engaging experience for Dr.
Lawlor and the families in
attendance.

A warm thank you to

everyone involved. Your
participation and generous
contributions to the CMD-TR
will help get scientists what
they need to provide the
answers patient families
want.
Get Counted! Look for
Get Counted! is a community-based initiative that began in announcements
response to identified needs for accessible information and
patient samples for research. We’ve had the infrastructure in
on our Facebook
place to answer these needs but the CMD communities page in 2016!
lacked awareness of these resources and the benefit to facebook.com/
supporting them. cmd.tissuerepository/

To find out how you can participate, and even 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, and
Scoggins families, the Children’s Hospital of Wisconsin
Foundation, the Children’s Research Institute, and
Audentes Therapeutics.

Lawlor laboratory personnel pictured above from left to right: Dr. Michael Lawlor is
Director of the CMD Tissue Repository and of the Pediatric Pathology
Neuromuscular Lab, Jenny Tinklenberg is a research technologist, Hui Meng is a
research associate, and Stacy Cossette is the CMD Tissue Repository manager