matters of heart

february 2016   

Joey+Rory are a husband-and-wife country music duo, admired as much for their musical talents as for their genuine sharing of what they celebrate in life--each other, family, faith, farm life and music. Having already received an Academy of Country Music Award and other awards, this year they were nominated for the Grammy Award for Best Duo/Group Country Vocal Performance.
For the Loeys-Dietz Syndrome Foundation, Joey+Rory are also hearts of gold. They've chosen the LDSF for a generous donation associated with the sales of their latest CD, "Hymns That Are Important To Us," a collection of gospel songs. 
"Hymns That Are Important To Us" is an especially moving recording since it's the last one the couple was able to record together. Theirs has been a journey of profound love and faith, as Rory shares through his personal blog.
The CD was just released on February 12 and a deluxe CD package including never-before-seen photos and lyrics is sold exclusively through Cracker Barrel restaurants.

We couldn't be more grateful for their talents, their joyful spirit, and their voices in raising awareness of Loeys-Dietz syndrome. 


We're happy to announce that registration is now open for our 2016 Conference in Baltimore, Maryland. Here's what we have lined up:

Friday, June 24th (Noon-9:30pm)
Register from noon-6pm. Visit the National Aquarium, check out the Resource Fair, and join us for a welcome reception and dinner. After dinner, adults can join in an LDS 101 and a social (child care will be provided).  
Saturday June 25th (8am-9:30pm)
Learn more about Loeys-Dietz from leading experts through plenary and breakout sessions on cardiac, GI, orthopedic, and other manifestations of Loeys-Dietz. Come ready with your questions. End the day with a luau!
Sunday June 26th (8am-12:30pm)
On Sunday we turn to managing the other ways Loeys-Dietz affects us. Join in discussions with psychologists, a physical therapist, and a meditation expert; connect with support groups for moms, dads, adults, siblings, and teens; and learn how you too can fundraise for the LDSF.

Lodging: The LDSF has secured rooms for Friday and Saturday nights at the Marriott Renaissance in Baltimore's Inner Harbor for the rate of $169.00 per night plus tax. We have secured a block of rooms that will be filled on a first come first serve basis. Information on how to reserve a room at our discounted rate will be provided after conference registration has been received.
Rachel Martin shares her story

I attended my first Loeys-Dietz Syndrome Foundation Conference in June 2014.  I didn't really know what to expect but was looking forward to meeting some of the friends that I had 'met' online.  What a weekend it turned out to be! 


If you're lucky enough to have a Cracker Barrel in your area, visit the restaurant and buy a copy of Joey+Rory's "Hymns That Are Important To Us."
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 or through our Facebook page.

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 and select the LDSF as the charitable organization to receive donations from eligible purchases.


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