Matters of Heart: October 2018

Meet the LDSF Board of Directors: Julie Wilson

At nearly three months of age, while he was still recovering from his second heart surgery in the CICU, our sweet son Connor received his diagnosis of Loeys-Dietz Syndrome. The geneticists' explanations were accompanied with a stapled, detailed print-out about the syndrome and the Loeys-Dietz Syndrome Foundation (LDSF) website address.

Soon after, I reached out to the Foundation for a list of any possible families to connect with and received a quick reply from Gretchen Oswald MacCarrick. With these details, we met families in person and over the internet. We were not alone!   What a great relief this gave me.

Around that time, I also learned that 2012 would be a conference year for families, patients, caregivers, and professionals in Baltimore. I was so excited that I registered our family the first day conference registration opened that year and then started the countdown to its date! At eight months of age, Connor took his first journey with us to Baltimore to visit the Johns Hopkins Hospital for specialist appointments and for the Loeys-Dietz Syndrome Foundation Conference. After attending, we left with more connections, tons of information, gratitude, and high hopes. We also had the privilege and honor of meeting Dr. Dietz and Dr. Loeys! My husband and I knew then that we wanted to help the foundation in some way. 

But how?

Connor celebrated his first birthday later that year. Despite all odds and multiple surgeries that first year, our son turned one! We celebrated BIG! In order to give back in some way to the LDSF and all they were able to do for us, we started with a small fundraiser for LDSF at his party. In addition, a few months after his first birthday party, we asked to be added to the foundation's volunteer list and helped with a few small tasks. 

In 2015, we joined the 2016 conference committee. In 2016, I joined the board of directors. I helped again with this year's (2018) conference and will continue to co-chair the conference committee for the 2020 Loeys-Dietz Syndrome Foundation Conference. I enjoy being able to help recreate our first-time conference experience for others and reuniting LDS families each time. 

The Foundation continues to give me hope and support, and I will do what I can to help it continue for my son and all the others affected by LDS, as well as their families and loved ones. I hope you will join me. 

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Mixed Bag Design Fundraiser

The LDSF would like to announce a great opportunity for YOU to get involved and help make a difference while supporting our mission.  Mixed Bag Designs has partnered with us and is giving 40% of all online sales to The LDSF from now until December 23rd. Their online catalog offers a wide range of unique items that would be great for you to use or give as a gift. Please encourage friends and family to join in the shopping frenzy and support our foundation.  A little help goes a long way. The holidays will soon be here before you know it. Why not get a head start and beat the shopping crowds and craze? We've set a $500.00 October goal. Here's your opportunity to help us reach it or surpass it. Stay tuned for updates. Thanks for all you do!!!!

  • Go to

  • Be sure you are supporting The Loeys-Dietz Syndrome Foundation ID# 791474

  • Shop, shop, shop away (all purchases will be shipped directly to your address)

  • Invite friends and family to shop Mixed Bags Designs for a great cause

It's that time of the year again! Getting ready to "trim the tree!" 

Thanks to the Kasper family in Chicago for raising awareness about Loeys-Dietz syndrome with an LDS tree at the Brookfield Zoo. Check out the Loeys-Dietz families page on FB for contact information and instructions to have your photos on this special tree!  
If you are in the area, join in the fun of decorating and building community on Dec 2nd!

P.S. We didn't forget about Halloween!! Make sure to post pictures of your favorite ghosts and goblins on LDSF FB page around Oct 31st!

Loeys-Dietz syndrome: Did you know?  

Thanks to everyone who participated in our first mini-survey for our 'Did you know?' series. Over 150 people gave feedback on headaches in Loeys-Dietz syndrome. Check it out here!

Have a topic you'd like like to ask other LDSF community members about? Send your suggestions to:!

Events to check out!


2018 Heritable Aortic Disorders Symposium

Location: Toronto, Canada

Dates: Nov 30-Dec 1, 2018

-The first day is for physicians/trainees, 2nd day for patients/ families

-Final program and registration details:
Marfan Foundation: Virtual Medical Symposium Series--Loeys-Dietz syndrome
Location: online webinarDate: Thursday, Nov 8th, 6-7pm ESTSpeaker: Hal Dietz, MDregister online: LDS Virtual Medical Symposium 

Marfan Foundation: Virtual Medical Symposium Series--Loeys-Dietz syndrome

Location: Online Webinar

Date: Thursday, Nov 8th, 6-7pm EST

Speaker: Hal Dietz, MD

Register online: LDS Virtual Medical Symposium