Sometimes it makes all the difference to talk to someone who truly understands what you're going through. Connecting with other people with the same diagnosis can be an uplifting, informative and such a heart warming experience say alot of our project members. That's why in the early days of The Minicore Project we started to put together a sort of "database" of families that had an Official diagnosis of Minicore Myopathy, who in turn were willing to share their experiences, knowledge and be there for newly diagnosed families. Since then we've had 40 people sign up. You never know, you could end up making life long friendships.
How do I connect with another family?
Just send over an e-mail via our Contact Us page with the subject of "Minicore Family Contacts" and confirmation that you or a loved one has a definite diagnosis of Minicore Myopathy, including your location and we will e-mail you back with the contact information of the nearest family to you. Failing that we couldn't find someone close we will do our best to match you up with a family regardless. You can also tell us to be more specific in our search for you. For example. if your child is the one diagnosed...you may wish to speak to other parents/an older diagnosed person of the same gender as your child so you can ask questions OR perhaps you want to connect with someone the same age/similiar stage of the condition. It's possible. So please don't hesitate to tell us exactly the kind of family you're looking for.
"Good Friends Are Hard To Find, Harder To Leave And IMPOSSIBLE To Forget...."