matters of heart







april 2016   
HAVEN'T YET REGISTERED FOR CONFERENCE?
Three reasons why you should register today


#1 Secure your discounted hotel room
We've blocked some rooms for Friday and Saturday nights at the Marriott Renaissance in Baltimore's Inner Harbor, where we'll be holding the Conference. A few blocked rooms are still available for $169.00 per night plus tax. First come, first served. We'll send you information on how to reserve a room at our discounted rate once you register.

#2 Ensure better travel prices and option
Last minute travel tends to be more expensive. And the earlier you book your travel, the more likely you'll find flights that work for your schedule. The closest airport is Baltimore Washington International (BWI).

#3 Make your voice heard
Registration helps gauge your interest in different issues relating to Loeys-Dietz. The more time we have to plan, the more likely we'll be to able to accommodate everyone's interests.

REGISTRATION CLOSES JUNE 1st

RESEARCH OPPORTUNITY

We were contacted by Dr. Tom Collins at Arkansas Children's Hospital regarding an opportunity for families to participate in a research study regarding Loeys-Dietz Syndrome and Neurodevelopmental Issues. You can see his full letter and the survey at the link below. We hope you would please participate. READ MORE

OPPORTUNITIES TO TAKE HEART

If you haven't already met Joey+Rory, you should. For their talents, their personal journey, and their generosity. They've decided to use their latest album, "Hymns That Are Important To Us," as a platform to spread awareness about Loeys-Dietz and the LDSF.

If you're lucky enough to have a Cracker Barrel in your area, visit the restaurant and buy a copy. While you're there, take two steps:
  • Let the store manager know about your connection to Loeys-Dietz Syndrome and thank them for supporting the LDSF.
  • Take a picture of yourself with the CD in front of a Cracker Barrel sign and share it with us at info@loeysdietz.org or through our Facebook page.
HELP US EVERYDAY    

With AmazonSmile, Amazon essentially donates a small portion of sales to the charity of your choice. You sign up once, designate the LDSF as your charity, then remember to shop through smile.Amazon and bingo. Same Amazon store, same Amazon prices, only difference is the donation you're generating. 

To sign up, go to smile.amazon.com and select the LDSF as the charitable organization to receive donations from eligible purchases.



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