7329Re: [Myotubular_Myopathy] Information Point Newsletter
- Jun 25, 2010
Hi Toni, I hope this message finds you doing well. You do such great work for our community - Thank you for that!I have great news: Jacob received an award for receiving all As and Bs for 2nd grade (actually 1st grade, too). He does so well in school. Do you think doing a blurb or article about him and his accomplishments is something you would be interested in? I think about all the families who have to fight to get an appropriate education for their child(ren) who have special needs, and Jacob is an example of how important that fight is and what is possible for other kids like him.Let me know!Thanks again, Amanda
--- On Thu, 6/24/10, TONI ABRAM <toni.abram1@...> wrote:
From: TONI ABRAM <toni.abram1@...>
Subject: [Myotubular_Myopathy] Information Point Newsletter
Date: Thursday, June 24, 2010, 4:44 AMHello EveryoneWork will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion.
If you have a story to share, the Information Point wants to hear from you. Maybe you have been involved in:
* planning a fundraising event which you wish to publicise, or being involved in an event which has already taken place
* academic or creative achievements – say an award, qualification, work displayed somewhere or some other milestone
* cnm / mtm family get togethers
* involvement in research
* discovery of a piece of equipment that has made your life or the life of your child easier
If you would like to take part in our new 'Getting to Know You' feature, please ask for a questionnaire.
There are no strict guidelines about the articles e.g. they don’t have be a certain length or adhere to a set format, the list above is just ideas - it is more important that the submissions are heartfelt and show the diversity of the cnm / mtm community to the big wide world.
The Information Point newsletter cannot exist without your stories, so please do get in touch - articles from all areas of the community, whatever your age, whether you are affected by the x-linked, recessive or dominant form of the condition and from all parts of the world are welcomed.
If you have a story you would like to share, please contact the Information Point at centronuclear.org@....Toni AbramThe Information Point for Centronuclear and Myotubular Myopathy
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