Congenital Muscle Disease Tissue Repository Newsletter - A look back at 2015

7/25/2019 Congenital Muscle Disease Tissue Repository Newsletter - A look back at 2015

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December 15 Issue

The Year In Review

Centralizing Specimens

NYC Meet and Greet

Get Counted

Supporters

A Look At 2015Early in the year we hosted a webinar to inform

CM and CMD families of the purpose we serve.

We also launched our webpage, set-up a

Facebook page, translated our autopsy materials

into French and German, and held two Meet-and-Greetsone online plus another one in New York

City in November.

We increased participation at an extraordinary

rate this year. We now have 99 enrolled and 35

individual tissue donors that have contributed

over 220 tissue specimens. Additionally, we have

cell lines banked from several individual donors

representing a variety of CM and CMD subtypes.

Northwind Traders Newsletter May 2016

The CMD-TR is accepting tissuedonations from most English-speakingregions of the world. Visit our website at

mcw.edu/CMDTR
http://www.mcw.edu/CMDTRhttp://www.mcw.edu/CMDTRhttp://www.mcw.edu/CMDTR


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The CMD-TR Preserves Your Tissue SpecimensThe 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.

Hui Meng, PhD, Jennifer Tinklenberg, MS, and Stacy Cossette, MS, of the Lawlor laboratory
http://www.cmdir.org/http://www.cmdir.org/http://www.cmdir.org/


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CMD TissueRepository Meet-and-Greet withDr. 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. Lawlors scientific talk at

NYU and then spent some

time talking about research

advancements in areas

relevant to their interests.

Dr. Lawlor is leading and

collaborating on several

muscle disease studies. He

was able to provide anupdate on some of those

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 generouscontributions to the CMD-TR

will help get scientists what

they need to provide the

answers patient families

want.

Dr. Lawlor, the CMD-TR Director, at a participant family Meetand-Greet in New York City held in November

Viewing muscle biopsies


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Look for

announcements

on our Facebook

page in 2016!

facebook.com/

cmd.tissuerepository/

Get Counted!Get Counted! is a community-based initiative that began in

response to identified needs for accessible information and

patient samples for research. Weve had the infrastructure in

place to answer these needs but the CMD communitieslacked awareness of these resources and the benefit to

supporting them.

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
https://www.facebook.com/cmd.tissuerepository/https://www.facebook.com/cmd.tissuerepository/https://www.facebook.com/cmd.tissuerepository/mailto:[email protected]:[email protected]://www.facebook.com/cmd.tissuerepository/mailto:[email protected]://www.facebook.com/cmd.tissuerepository/https://www.facebook.com/cmd.tissuerepository/


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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, andScoggins families, the Childrens Hospital of Wisconsin

Foundation, the Childrens Research Institute, and

Audentes Therapeutics.

Lawlor laboratory personnel pictured above from left to right: Dr. Michael Lawlor isDirector of the CMD Tissue Repository and of the Pediatric Pathology

Neuromuscular Lab, Jenny Tinklenberg is a research technologist, Hui Meng is aresearch associate, and Stacy Cossette is the CMD Tissue Repository manager

Documents

Congenital Muscle Disease Tissue Repository Newsletter - A look back at 2015