MTM-CNM Family Conference Newsletter
Remembrance and Rare Diseases February 2015
In This Issue
Remembering Benjamin
Wear Blue for the Cure
Support the Conference
Remembering Benjamin Sirmon and all of our "angels"
KC, Hillary, and Benjamin at the 2013 Conference

Our hearts are with the Sirmon family as they lay to rest sweet Benjamin. Take a moment to read his mother, Hillary's, tender reflections on her blog. 

You may also wish to donate to an all-inclusive playground, which Benjamin has inspired.

Benjamin joins Louie Wilhelm and Matteo Serafano (both also 2013 conference attendees) and all of our predeceased loved ones in a place beyond pain and restriction. N evertheless, we miss them terribly.

As your MTM-CNM family, we can't take away the pain of loss, but we will feel it with you and be by your side in spirit.

We remember. We hope. We love.
 
As you may know, the first Rare Disease Day was first observed in Europe in 2008, then in the US in 2009, and has grown to participation in over 80 countries around the world. Rare Disease Day is celebrated on Feb. 28 or in leap years on Feb. 29 (the rarest day). The goal is to bring attention and support to this critical public health issue. 

Happy Rare Disease Day from your MTM-CNM Family Conference Planning Team! Please read on to see how you might participate in Rare Disease Day awareness.


 
Wear Blue for the Cure
 
Tomorrow is the day that Where There's a Will There's a Cure is raising awareness for Rare Disease Day by wearing blue and asking you to post your "Blue for the Cure" on their Facebook page! 

Will Cure distributed research grants totaling $105,000 last year. We deeply appreciate their dedicated team. Please join us in supporting their awesome event!
 
Wards at Boston Marathon
Erin, Mark, and Will Ward
Support the Conference

Talk about multi-tasking, the Ward family will be celebrating *both* Will's 14th birthday and Rare Disease Day tomorrow, February 28th! They are using this opportunity to raise rare disease awareness by hosting a Facebook event "A Little Will Goes a Long Way" to solicit funds from family and friends to support the MTM-CNM Family Conference. 

Happy birthday, Will and thanks to you and your family for your years of support for the conference and for research!

We hope some others will consider doing similar fundraisers or come up with other creative ideas...Thank you to all the families who have joined our conference fundraiser on Crowdrise. If you haven't already done so, you can make your own page. Just ask us if you need any help. Remember: A little goes a long way!

With more families signing up by the day--our block of rooms at the hotel is rapidly filling--we are all going to need to pull together to cover the costs and make this event a success for our community!

Matt Patterson and Emi Vasquez
Audentes Therapeutics Launches Patient Advocacy Site

 

Here is a new press release from  Audentes Therapeutics, Inc. , announcing the launch of their Patient Advocacy Website and sharing how they will be joining global organizations in celebrating Rare Disease Day. We are grateful that Audentes is a sponsor of our 2015 MTM-CNM Family Conference and for all their work on behalf of our community.

The Audentes Patient Advocacy site includes beautiful photos and stories of members of our MTM community, as well as resources, patient education and updates on future clinical trials in Gene Replacement Therapy. 

 
Thank you for your continued support. We're always here to answer your questions. Keep on the lookout for more updates.

Warmly,

MTM-CNM Family Conference Planning Team!
MTM-CNM Family Connection, Inc.