matters of heart







october 2017   
Happy October!

 

The 4rd annual LDSF Halloween costume contest is underway! Private Message the photos of your favorite ghouls and goblins to Loeys-Dietz Syndrome Foundation on Facebook anytime before November 4th. We are adding the photos as we get them to the Halloween Costume Contest 2017 album on Facebook. We will be selecting our 3 favorites and sending them a special prize. 



CONFERENCE 2018: SAVE THE DATE! 


Hmmmmm... I don't know... Should we, shouldn't we?...Trying to decide
about attending conference next year? The Padilla's were first time attendees at the 2016 LDSF Conference. Here's what they have to say about their first conference.

  
The Loeys-Dietz Syndrome conference?  What's it all about? Is this something I should attend? If you find yourself asking whether or not to fit this into your schedule this July, The Padilla's would love to share their first experience with you in the hopes of helping to answer the questions above.  For we asked ourselves the very same questions prior to our first conference in 2016.

In June of 2016, our family arrived in Baltimore Maryland to embark on a weekend that would prove to be one of the most meaningful trips of our lives.  Our son Noah (12) has Loeys-Dietz Syndrome and although there had been conferences prior to this, his health issues had not allowed us to attend.  The feeling of excitement to finally physically see in the flesh some of the families we have already connected with was simply overwhelming and so desperately needed.  To be able to hug and flash a smile at someone who may have a similar story is simply what we were longing for.  You see LDS patients spend most of their lives being told how "rare" they are, so to have that much beauty and unique rareness in one place was simply amazing to us. This conference was a moment that painted a very vivid picture expressing to us that we are not alone.
This weekend was jammed packed with moments to connect, learn, laugh, and find out how to become involved.  All four of the boys (ranging from 8 to 16 at the time) enjoyed the activities that were scheduled, while my husband and I attended very informative breakout sessions with doctors and professionals who are extremely knowledgeable when it comes to living with and medically monitoring Loeys-Dietz Syndrome.  The prearranged family activity allowed us to enjoy the touristy part of Maryland 
 
and and do it with new friends we just made.  There was also time set aside to just have fun, especially during our Hawaiian luau party.

The weekend was busy, yes.  But it was the kind of busy that is so worth it.  Our family connected with so many other families who go through the same types of struggles as us, perhaps even more and being able to establish that friendship and create that bond is beyond remarkable. Noah bonded with so many and to this day speaks on a weekly basis with friends who understand him from the US and from other countries. We learned, we are guided in the right direction in terms of the medical aspect of LDS, we found ways to support the LDS mission, and we made friends that will last a lifetime.  So as you ask yourself what am I doing this July? The Padilla's would like to respond, we hope to see you at the conference.      




The LDSF is looking for a few adult volunteers to help with  a specific education project

In order to create a "newly diagnosed" packet, we are looking for some young and older adults to help write some words of advice to those joining our community. We are looking for some practical advice as well as some emotional wisdom and perspective. 

Everyone has those "if I only knew what I know now" type stories and advice. If you would like to help with this specific project, please email Gretchen MacCarrick at gretchen.maccarrick@loeysdietz.org

Additionally, we are always looking for creative and thoughtful people to help with resource ideas and implementation.  If you have an idea about educational resources you would like to see for the LDSF community, please email Gretchen. And, be sure to check out all the great resources online!  

Because the LDSF is run by a volunteer BOD, we would love to connect more people with committees such as conference, education, social media and fundraising. Whether you have 30 minutes a week or 3 hours, we would love to hear from you! You can email info@loeysdietz.org to get connected!
 
 
 We want your opinion on the next LDSF group fundraiser!

In 2016, The LDSF's group fundraiser was a pasta sale (some of you may still be eating all the fun pasta shapes still!) We'd love your opinion on our 2018 group fundraiser. It will take < 1 minute. As always, thanks for taking heart!




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