matters of heart

april 2018   

REGISTER NOW for the 2018
 Loeys-Dietz Syndrome Foundation Conference
--registration cost increases May 7th

Friday, July 6th to Sunday, July 8th
Holiday Inn Baltimore-Inner Harbor, Baltimore, MD
301 West Lombard Street
We hope you'll Take Heart and join us this summer in Baltimore to meet other LDS families and learn from some of the top medical professionals working with LDS patients.

Newly released: Conference Agenda!
Early Registration: Feb 1-May 6, 2018 (adult cost: $185, child/teen cost: $85)

Late Registration: May 7-June 4, 2018 (adult cost: $210, child/teen cost: $110)

Hotel Information: We have a secure block of rooms that will be filled on a first-come first-serve basis.   AFTER YOU REGISTER, code for conference hotel pricing will be emailed to you.  We encourage early registration.  Reservation cut-off is June 5, 2018
Please contact with questions

Why come to conference?
Why come to conference?

Have an inspirational Genetic Counselor in your medical journey? Considering nominating him/her for the 2018 Code Talker award!

Check out an essay on Ben Helm, nominated by Diana Kafantaris. Ben was a finalist for the award in 2017 for an essay on Diana's family with LDS. Ben is a genetic counselor  in cardiovascular genetics at the IU School of Medicine and Riley Hospital for Children in Indianapolis. 

Ben Helm, CGC and Kafantaris family
photo cred: Genome magazine

Like Family
(click on Read Benjamin's essay)
2017 Finalist

A tremendous  THANK YOU!  to all our incredible and generous donors. It's through your support that we are able to help keep conferences expenses as low as we can for participants.

Over the next few months we'd like to highlight some EASY ways to fundraise for the LDSF! 

What's your passion? Channel it for awareness and fundraising!

Many thanks to Marisela Gallegos for a creative way to build awareness about Loeys-Dietz syndrome and to raise funds for the LDSF. Marisela is a senior in high school in Los Angeles and just found out last year that both she and her mother have LDS. She has been using her art to help process this diagnosis and held a gallery showing on March 18th at a Panera Bread. It was a wonderful way to share her art and her LDS story!

Another great example of how local partnerships can help awareness and fundraising!

Thank you to Sugar Fixation in Chicago, Illinois! If you have a sweet tooth for a good cause, check it out!  

Partnering with the Padilla family, Sugar Fixation graciously raised over $1,000 last year for the Foundation. They are pairing up again to match or surpass their past donation!  Order cookies and help out a great cause while treating yourself to delicious cookies. 

Shipping is available for an additional $15. Make payments for cookies and shipping cost if applicable at

This will be running until mid May! 

Cookie flavors: Oatmeal raisin, chocolate chip, chocolate chip with walnuts, peanut butter explosion, turtle and rocky road. 

$6 a box.

Not getting your cookies shipped? Delivery available for $10