Welcome
to t he Nem a l i ne My op at hy ( N M ) C om mu n it y !
Whether it’s you, your child or loved one that has been diagnosed with Nemaline Myopathy (NM),
we’re here to help you along the way. We are an international group of hundreds affected in some way
by NM. In addition to a biennial scientific/family conference, and regular NM family gatherings, there
are several ways for you to join us. Think of our community as your source for support, information,
and connections. Life is for living, so let’s make the most of it together!
Helpful Resources
The Care of Congenital Myopathy: A Guide for Families
Click here to download this comprehensive care guide.
Specifically developed for families and people with congenital
myopathy (CM), this guide is filled with medical knowledge from
specialists and expertise from the very people living and caring
for someone with CM. The pages are a testimony to many of the
challenges, joys, concerns and triumphs that are typical for those
living a not-so-typical life.
A Foundation Building Strength for Nemaline Myopathy
AFBS was founded by the parents of a child with NM. This
nonprofit’s mission is to find medical treatments for NM. Like
www.facebook.com/BuildingStrength to get the latest updates
from the foundation. Invite friends to like the page, too. You can
also visit www.buildingstrength.org to learn more.
NM Community Ambassadors
The following people are here to provide support.
Canada
May Sandvar & Scott Shannon, http://babyepanda.
blogspot.ca/ and https://www.facebook.com/
HopeForSuperE/
Western Canada (son born 2013)
Europe
Stephen Brunning, stephen_0902@yahoo.co.uk
England (adult with NM)
Axel Stenhammar & Anna Hallgren,
axel.o.anna@hotmail.com
Sweden (adult with NM & daughter born 2009)
Suzanna & Neal Carter, nsfcarter@live.com
South West England (adult with NM)
USA
Stephanie & Chuck English, smarieenglish@gmail.
com, Raisingadleighandjaxon.blogspot.com
Midwest USA (son born 2012)
Rachel Goss, rachelgross424@gmail.com
Northeastern USA (adult with NM)
We a r e a c om mu n it y
t h at u nd e r s t a nd s y ou a nd
s t r e tc he s a c ro s s t he g lob e .
Connect Online
Find us on Facebook Badge CMYK / .eps
“Nemaline Myopathy Community: We’re All In This
Together” on Facebook
This closed group is an information and support hub, no
matter where you are on the journey.
www.facebook.com/groups/1206757622673721/
Nemaline Myopathy Facebook Page
Provides information and research updates.
www.facebook.com/NemalineMyopathy
Promote NM Treatment Discovery
Don’t Delay, Sign Up Today!
Help fulfill two critical needs for developing a
treatment: showing pharmaceutical companies the
number of people affected and donating tissue to
scientists for research.
Congenital Muscle Disease International Registry
The CMDIR is available in four languages to promote studies of
the natural course of muscle disease. These studies are a critical
step before clinical trials can begin to evaluate treatment effects
in people with NM. Visit www.cmdir.org to sign up.
Congenital Muscle Disease Tissue Repository (CMD-TR)
Centralized location to safely store and distribute muscle and
organ tissue to scientists working on treatment discovery for
nemaline myopathy. No new tissue needs to be taken to enroll.
All sources are accepted when available: Leftover muscle biopsy
tissue, new surgical tissue, or tissue from autopsy. To learn more
visit www.mcw.edu/cmdtr
Host a Fundraiser for AFBS
Help fund research towards a medical treatment for NM!
Contact Patty Mitchell patty@buildingstrength.org for
information and ideas.