matters of heart







march 2018   
 


 
REGISTER NOW for the 2018
 Loeys-Dietz Syndrome Foundation Conference

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 conference@loeysdietz.org with questions




Meeting members of our community:
- Dalton Matthews will be a first time attendee at conference!

My name is Dalton Mathews, I'm 22, from a small city in the pacific northwest; Longview, WA. I was first diagnosed with chronic heart failure just a few months after graduating high school in 2013, which came as one of the biggest surprises so far since I am the first and only person in my family with any type of cardiovascular issue. Over the course of the next 2 1/2 years, going through countless amounts of appointments and doctors between the local hospital and OHSU with Dr. Luke Burchill and Dr. Shaun Ageno, they were able to see my aorta wasn't functioning normally, and appeared to be much larger. Through DNA testing and visual inspections, they diagnosed me with LDS in March of 2016, and within a few short months I underwent my first and only open-heart surgery at University of Washington Regional Heart Center. It was a Valve Sparing Aortic Root Replacement surgery performed by Dr. Nahush Mokadom, and I have to say my life has improved tremendously since July of 2016. Every 6-9 months I have my LDS check up with an amazing doctor, Dr. Catherine Otto, each time usually ending with good news and longer periods between each appointment. I have a much broader perspective and strive to educate people about being proactive with your heart. I am excited beyond words for this year's event in Baltimore, and thankful for the great people putting it on and letting me volunteer. This is my first time attending, I'm not exactly sure what to expect but I know what I am hoping to get out of it, and that's connection. Throughout this journey with my health, I have felt as if I was alone because of where I am from, there isn't anyone I can connect with when it comes to LDS. It will be relieving when I finally get to sit in a room with people just like me and be able to strike up a conversation, hear someone else's thoughts and opinions about what we are dealing with on a day to day basis. Thanks for letting me share the beginning of my jo urney, and I look forward to meeting all of you. (Pictured below Dalton, father: Scott, mother: Kyra and brother: Danner)
 




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! 

For March newsletter, we are focusing on Facebook Fundraising. You probably see people fundraising for birthdays, holidays, or just 'cause! Very simple and easy!

1. Click on Fundraiser tab on the left side of your tool bar when you are on a laptop/desktop.
2. Click on tab "Raise Money", you'll be prompted with step-by-step instructions to choose:
--Nonprofit: Loeys-Dietz Syndrome Foundation
--Financial Goal (How much money do you want to raise?)
--Time frame (When should your fundraiser end?)
--Title of your fundraiser?
--Why are you raising money?: This is your opportunity to tell your  personal story or goal for raising funds!
3. Upload a cover photo for your fundraiser
4. Share with friends!


A special thanks to  Jennie Bange,  Laura Papsun and  Noor Zahra Aham, and all of those who have held Facebook fundraisers to help support the LDSF mission recently!




Check it out! Quick Medical Genetics has published its lecture on Loeys-Dietz syndrome. A ten minute video on genetic conditions aimed towards trainees and medical professionals: