matters of heart

october 2014    


We're delighted to welcome Carol Nelson-Cheng, Tom Fuoco, Mary Kasten, Gabe McCauley, and Dawn Reiner to our Board of Directors! Their smarts, skills, creativity, and precious energy are already advancing our mission. Read More. 



 Save-the-date for 2016 Conference: June 24-26 in Baltimore, MD


How have you used the medical guidelines?

How have you used the medical guidelines published earlier this year? Did they help you better understand how to manage your health or your child's health? Did you provide them to a doctor or other health care professional? Have any of your doctors referred to the guidelines in their interactions with you?


We funded the medical guidelines through our end-of-year fundraising last year and we'd love to tell donors how we put their contributions to work. Hearing from you would help us tell a better story. Please send us your thoughts and experiences by Friday, November 7, to



October - Online 

There's still time to join in our first ever online Halloween costume contest! Send pictures of your ghoul or goblin to anytime in October. We are going to be posting them to our Facebook page. The winner will receive a haunting prize from the LDSF!




Coming up...


November 1 - Panama City Beach, FL
Tomas Orihuela will be participating in Ironman Florida supporting the LDSF via the Move Your Feet for Loeys-Dietz campaign. Good Luck Tomas!


With donations still coming in, Kelly Toohey's fundraiser has raised nearly $9,000 and counting! Thanks to her hard work and supporters like these two policemen from the PBA Local 107, Kelly's event attracted the largest turnout ever for an event of this kind according to the manager of the restaurant, "The Barn", where the dinner was held. Thank you Kelly, and all those who came out in support or her event for Taking Heart!


Abby's Amazing Race on October 18 was, for lack of a better term, amazing! The small town of Marvell, Arkansas came together in a big way. Thank you so much to all those who came out, or donated, in support of the event. An even bigger thank you to the Kemmer family! They hosted an incredible event that has already raised a staggering $12,000! We can't thank you all enough for Taking Heart!


For more information on hosting a dinner, 5K, or other fundraising event in your area supporting the LDSF, contact us at


Welzoo, AmazonSmile & Bravelets

Surfing the internet? Ordering off Amazon? Looking for some unique jewelry? Did you know you can help generate funds for the LDSF with things you already do? Take a moment to see how you can help us raise funds everyday. Learn how to help the LDSF.


Like us on Facebook   Follow us on Twitter