matters of heart

august 2016   


What would you say if there was a fun, easy fundraiser that would support the mission of the Loeys-Dietz Syndrome Foundation? What if all you had to do was express your desire to jump on board and then promote and advertise the fundraiser via email, social media, and word of mouth? What if a support letter explaining our mission and our cause was already generated just waiting for you to personalize and begin fundraising? What if this type of fundraiser was already set up and ready to launch? The LDSF and the Fundraising Committee is hoping that you would say SIGN ME UP! 

We are excited to announce that in just a few short weeks, we will launch our first fundraiser that gives an opportunity for all LDS families within the USA to participate.  Our Fun Pasta Fundraiser will launch September 1st and run through September 30th.  Fun Pasta Fundraising is exactly that - "fun" and easy.  Fun Pasta has a variety of yummy dry pastas with a long shelf life. This pasta makes for great unique gifts and comes with recipe suggestions. Pasta is ordered online via the link provided and will be delivered straight to the purchaser's door within a week. 40% of all pasta order proceeds will directly support the Loeys-Dietz Syndrome Foundation research goal. It would be terrific if you purchased pasta yourself from the link provided however, the real goal is to have you jump on board and commit to advertising and/or promoting this fundraiser for four short weeks to friends, family, and anyone else willing to support our cause.  The more people that purchase pasta, the more funds received by the LDSF, and ultimately the closer we are to reaching our research goal for 2018. Please go to our Fun Pasta Fundraising page.
If you are interested in participating in this fundraiser, please email the Fundraising Committee:  Once you contact the Fundraising Committee, we will add you to the main page, send you a support letter to personalize, and provide you with fundraising suggestions and pointers.  On September 1st, let the fundraising begin! Together we can Take Heart in a big way! 
Now Available Online!

Did you miss the 2016 conference but want to see the incredible presentations that occurred at the general session? Were you at conference but want to review some of the material presented? You now can! 

We have begun to upload the videos of those amazing presenters and their presentations to our YouTube page. The link below is to a playlist of all the videos. As we finish uploading the remaining few we will add them to this same playlist. Enjoy!


Hopefully it is the new LDSF emergency alert card!

We hope this tool will help patients/families to always have on hand a source of information regarding Loeys-Dietz syndrome, as well as their personal medical information. We think this could be a very valuable addition to your wallet, purse, or pocket. 

You can download the card and watch a short instructional video at the link below.


We would like to thank all of you who have taken the time to participate in our survey regarding aortic/vascular surgery! The responses we have received are already shaping our surgery advice packets.

If you have not yet completed the survey, there is still time. Please, click on the link below for more information and links to the survey. The more participants we have, the more complete we can make these new resources!

Friend and Member of LDSF Board of Directors

It is with very heavy hearts we let our LDSF community know of the passing of Ed Page, a member of the Loeys-Dietz Syndrome Foundation Board of Directors. 

Ed was a kind and gentle soul with a quick wit and a wicked sense of humor. He was a man who spent more time worrying about others than about himself. Our prayers and well wishes go out to the Page family and to all those friends who were lucky enough to have their lives touched by Ed. He set an incredible example for others affected by LDS to, in his words, "see every day as a gift"We grieve for the loss of a friend and a great man. This loss serves as another stark reminder that there is still so much more we must do.
September 20, 2016

Joey+Rory, "Heart of Gold" award winners, have been long time supporters of the Loeys-Dietz Syndrome Foundation. They have relentlessly furthered the mission of the LDSF by raising awareness of Loeys-Dietz syndrome. In continuing this effort of bringing increased awareness to LDS, Rory has included a brief video about LDS in the pre-show to his feature length movie To Joey, With Love. To Joey, With Love shares the story of his late wife, Joey, and their amazing life together. It is coming to a theater near you on September 20, 2016, for one night only. To learn more or buy tickets, simply click on the link below.

The LDSF wishes Rory, Indiana, and the rest of the Feek family good luck on this project! We would also like to thank them for this incredible opportunity and for always Taking Heart!



We are truly thankful for all those who made gifts in honor of Wesley Bange's birthday and are deeply grateful to the family of Ed Page for designating the LDSF to receive gifts in his memory.

We would also like to thank all those who have become monthly recurring donors. Such contributions are assisting us in building a strong financial base upon which we can fulfill our mission. If you would like to join in making such a commitment, please do so right here.

Ever run a half-marathon? Ever run a half marathon in Long Beach California while raising funds for the LDSF? Well these amazing people are doing just that! A huge thank you to Marjohn Rasooly (pictured), Heidi Padilla, Maira Padilla, Luana Jimenez, and Julie Wilson who are holding a Move your Feet for Loeys-Dietz fundraiser in conjunction with the Long Beach Half Marathon in October. You can head over to their CrowdRise page to show your support!

Lake Hopatcong is the largest freshwater body of water in New Jersey best known for its Rotary Club and their incredible support of the LDSF!

The Rotary Club of Lake Hopatcong has long been a supporter of our mission. The current Club President, Thomas Toohey, is brother to Kelly Toohey (both pictured) a member of our LDS family. This year they have dedicated the proceeds from their fifth annual charity sporting clay shoot to to the LDSF and we can't thank them enough!

You can learn more about the rotary and this event on their website. If you live in or around Andover, NJ and would like to participate in the clay shoot, you can download the event brochure  with even more information.

More events and opportunities are on their way. Follow us on Facebook to make sure you don't miss any of them!


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