 Hey y’all! July is just around the corner, and we need your help! Time is running out to get the needed funds raised for the 2017 MTM-CNM Family Conference in Nashville!
An unparalled experience If you’ve been to one of our previous MTM-CNM Family Conferences, you know just how special they are. If you haven’t been yet, here is what some past attendees have said:
The cost of the Conference While the value to families and researchers alike is priceless, overall the conference weekend costs us nearly $300 per person. The bulk of the cost of the conference comes from the hotel facilities, meeting space, catering and service, which translates to about $40 per person for each lunch and $60 per person for each dinner. Other expenses include kids activities and supplies and various other related services that make the conference special. This does not include the cost of hotel rooms which are paid by the attendees. Who pays for it? We are extremely grateful to be lining up a number of generous corporate sponsors again for the 2017 MTM-CNM Family Conference. These are organizations who support our community and our efforts, and have some vested interest in helping to gather as many of us together in one place as possible. Like us, they seek to drive research forward towards effective treatments, and to support families in every stage of dealing with MTM/CNM. We couldn’t do this conference without them. However, despite their generosity, sponsorships do not cover all the expenses of our conference. After all, this is a family conference, created by families, run by families, and with families at the heart of the whole experience. And we want all families to be able to participate, with as little direct cost to them as possible. Therefore, we make this heartfelt appeal: We need your help! We are asking each family to help make this conference happen, by raising $500 or more for MTM-CNM Family Connection, by May 1st. If you can raise even more, that would be wonderful. If you can’t raise that much, we are grateful for whatever you can contribute - even if it is just words of support. The more money that we can raise as a community - as a family - the better we will be able to serve each other and continue to make a meaningful difference in the lives of those affected by myotubular and centronuclear myopathy. Let’s make April 2017 a month of amazing MTM-CNM fundraising! May 1st isn’t a hard deadline - our fundraising goes year-round - but we need to have our financial picture clear as we get closer to the conference in July. If you have the ability to make a $500 or more donation yourself, that is of course welcome, but what we are really hoping for is active participation in some form of fundraising. This helps beyond just the dollars: it gets more people contributing, which means more people involved and aware and joining us in our mission. How to get started? The simplest way that anyone can get involved in this fundraising is through our partnership with Crowdrise. Go to https://www.crowdrise.com/2017-mtm-cnm-family-conference and click “join the team” to set up your own profile page. It just takes a couple minutes! You can add your own photos and tell your own “story” if you wish, describing what the conference means to you. Then share your page with family and friends to request donations - easy! Just 20 donations of $25 each will get you to the $500 target. The donations are tax-deductible and transactions are handled securely by Crowdrise and Network for Good. If you need any help setting up your page, just ask! There are a number of other ways to get involved with fundraising, from hosting online product sales (we’ve recently benefited from LuLaRoe, Pampered Chef, Thirty-One, Younique) to 5k runs, yard sales, lemonade stands, “jeans days”, race sponsorships, and whatever else you can think of! If you want to do something but aren’t sure what (or how), feel free to contact us via email or start up a discussion with other families in our closed Facebook Group. If fundraising falls short of our goals, then we will have to cover more of the costs through registration fees, which we would rather not do since higher costs may make it difficult for some families to attend. So as an additional incentive, we will be offering $100 off registration for every $500 an individual or family raises. Just do it! The most important thing is to be involved - however you are able. Families, this is our conference. We can’t wait to see you there, and we thank you for helping to make it happen. Let’s do this together!
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 We are pleased to share this news from Dynacure, a new biotech company developing a novel treatment approach for Centronuclear Myopathies: http://www.dynacure.fr/news/dynacure-appoints-its-management-team-and-members-of-the-board-of-directors/
At our 2015 MTM-CNM Family Conference in Chicago, Dr. Johann Bohm from IGBMC in Strasbourg presented some of the early scientific work from Dr. Jocelyn Laporte’s lab (supported by a research grant from the Myotubular Trust) which has led to the creation of Dynacure in 2016. Dr. Belinda Cowling also presented on this topic at the 2016 European Family Conference in Germany (organized by ZNM-Zusammen Stark and Myotubular Trust). For a short summary of the theory behind Dynacure, please check out the article by Dr. Cowling on page 3 of this newsletter from ZNM-Zusammen Stark. We are grateful for Dynacure joining as a sponsor of our 2017 MTM-CNM Family Conference, and we look forward to hearing more from them this July in Nashville! |
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