Helping
Others
If YOU have been diagnosed with a myopathy, or someone you know has been,
please help others!! I would be happy to include your personal story below or just
simply your email address, whichever you prefer (or have the time for, right now!!)
Please feel free to contact me. I would be happy to hear from you. You can
email me at famadio@cogeco.ca
Others With Multicore Myopathy or a Neuromuscular Disorder
If you wish to correspond with anyone on the list below, please contact
me and I will forward your email on to them. However, the following people
are also members of the Myopathy Mailing List. If you wish to subscribe, the link is
Mailing List!
Faith's Story or you can email me at famadio@cogeco.ca. I will be happy to help in any way I can.
Becky can speak, not only as a person struggling and coping with Multicore Myopathy, but, as a parent raising a child with Multicore Myopathy. Read Becky and her son, Clayton's, stories. If you want to talk to Becky, please email me at famadio@cogeco.ca and I will be happy to forward your email on to her.
Read all about Bill at
Bill's Story . If you wish to email Bill,
please email me at famadio@cogeco.ca and I will be
happy to forward your email on to him.
Bill and Kim are the parents of a remarkable
daughter, Kyle, diagnosed
with Multicore Myopathy. Kim provided some background and information
about Kyle in a letter, recently....read Kim's
Letter.
Debbie's Story
Debbie is an absolutely wonderful and warm person who is always more than happy to
help!
Debbie & her husband, Jim, are parents to a beautiful little boy, Logan!
Logan, too, has been diagnosed with Multicore Myopathy. If
you would like to talk to Debbie, please email me,and, I will forward your email on to
Debbie.
Another one of our list members is Debbie Cawthorn.
Her son, Clay, has a congenital myopathy and she has an excellent site called The
Congenital Myopathy Site. You can access this site at the following url
http://webpages.charter.net/mccawthon/types.htm
Although Lucie was born with MD (Muscular Dystrophy) she wasn't diagnosed with Multicore Myopathy until she was a teenager. Lucie speaks both French and English and can correspond in either, so, if you are French-speaking, Lucie's the one to talk to. Please contact me famadio@cogeco.ca and I will be happy to forward your letter on.
Read Lucie & Eric's journey to become parents by clicking on
the title below!
Our Adoption Story: A Gift from
Heaven
Author Linda Crabtree
Magazine CMT...Today
Meredith's daughter, Julie, has been
diagnosed with Bethlem Myopathy. Meredith's site is an absolutely
tremendous resource for parents and patients alike.
You can access it at this url http://members.tripod.com/msweiner-ivil/julie/
Michelle's daughter, Sophie, born in 1994 , has been diagnosed with Multicore/minicore myopathy. Michelle provides some information about Sophie in the following letters, All about Sophie.
Nora's son, Tommy, born on March 11, 1996, was diagnosed with Multicore Myopathy when he was 18 months old. To learn more about Tommy, read Nora's letters
Roxanne and Mike are the parents of a delightful and talented young lady named Bethany. Bethany was diagnosed with Multicore/Minicore Myopathy when she was ten and a half years old. Roxanne provided some background and information about Bethany in a letter, recently....read Roxanne's letters
Sue Ann Robinson was diagnosed with Multicore Myopathy in March of 2006 at the University of Kentucky . You can get to know Sue Ann and read more about her diagnosis on her website. The url is http://www.minicorefamilyorg.com
Terri's son, Benjamin, born on March 26th, 1997, has been tentatively diagnosed with a Congenital Myopathy. Terri is an exceptionally valuable resource and she is always happy to be of help. Please email me at famadio@cogeco.ca and I will forward your email on to Terri.
Toni and her father,
Mike, have both been diagnosed with Centronuclear Myopathy.
Centronuclear and Myotubular Myopathy - The Information
Point is designed by Toni and you can access this site at this url http://www.centronuclear.org.uk/
The Newsletters from the Centronuclear and Myotubular Myopathy Site
can be accessed on the Information Point site at this url http://www.centronuclear.org.uk/cnmnewsletters2006.htm
And, since both Toni and her father, Mike,
have been diagnosed with Centronuclear Myopathy, you can read more about their journey at
this url http://www.centronuclear.org.uk/cnmtonimike2006.htm
Fiona is a wonderfully witty and delightful
young lady who has Multicore Myopathy. She originally lived in England, but, is now
MARRIED and living in the United States!
Read All about Fee!
Please report broken links or non-working email to famadio@cogeco.ca