Move Your Feet for Loeys-Dietz

So what is Loeys-Dietz? Up until very early January of this year, I had no clue! It was not until I met an amazing woman, Anne, that I found out. Anne has a genetic disorder called Loeys-Dietz Syndrome (LDS) that affects the connective tissue in the body. People with LDS can have complications with their cardiovascular, musculoskeletal, skin and gastrointestinal systems. The majority of individuals with LDS are diagnosed with aneurysms (commonly called enlargements or dilations) of the aortic root. Aneurysms can also be seen in all of the arteries. They monitor for aneurysms since they are at a risk for death due to aortic dissection (aneurysm rupture or tear). Another complication observed in individuals with LDS is cervical-spine instability (instability in the vertebrae directly below the skull). Some with LDS have physical characteristics; others do not. 

This past June, I attended the Loeys-Dietz Syndrome Foundation's (LDSF) conference and I was emotionally touched. I met some incredible people! I was amazed to see how so many people with LDS were in high spirits! Many viewed each day as a blessing. A few, as you would expect, were not in high spirits. They all have tough things to work through but many have learned to accept it and move forward with life! The conference is held in Baltimore every two years so it was a reunion of sorts for many of them. A large number of them keep in touch regularly through an amazing support group on Facebook.

While listening to the questions, the answers, the various stories and pep talks during the smaller breakout sessions on the first day, I started to wonder how I could help. I heard several stories about how so many of them truly missed exercising as they once could. I also heard stories about how difficult it is for parents to tell their children that they can not participate in contact sports at school even if they feel fine. Anne use to do strength and/or cardio workouts several days a week prior to being diagnosed with LDS in 2008. She can only, for the most part, swim and do light cardio these days. People living with LDS may never be able to train or even race in triathlons at the intensity that I do! It is highly recommended that they are able to hold a full conversation while exercising so that their heart rate remains low. What?!! No speed work? No tempo ride or runs? No all out sprints! Heck, during some of my workouts, I can barely say a word - except perhaps "awwww"!

I'm blessed to able to do what I do and what I enjoy. I'm not restricted to hold back during exercise. So, I am dedicating my upcoming Ironman race to Anne and all the LDS fighters! I will be competing in my second Ironman at the 2014 Ironman Florida on November 1st, 2014 in Panama City Beach, Florida. During my 2.4-mile swim in the Gulf of Mexico, my 112-mile bike ride, and my 26.2-mile run, I will be wearing custom LDSF apparel!

Take heart and donate now by visiting www.crowdrise.com/imfl. NOTE: We were recently made of aware that Crowdrise tries to charge you a processing fee that you DO NOT HAVE to pay!!! When donating, click on the words "Optional Processing Fee" and select 0%!!! LDSF has to pay a small fee regardless if you pay this optional fee.

Minimum online donation is $10. This is the minimum allowed by the website (Crowdrise) hosting the fundraiser.

You can also donate via a CHECK if you like!!! No processing fee paid by anyone!! :) Please make your check out to "Loeys-Dietz Syndrome Foundation" and simply give or mail to me or Anne. Please contact us for mailing address. Checks will be deposited in October or November since all checks will be provided to LDSF at the end of this fundraiser!

Everyone who donates will receive one FREE raffle ticket per every $25 they donate. Raffle ticket numbers will be emailed to you right after I get back from completing Ironman Florida! Raffle drawing will take place at Lakeview Harbor on November 7th, 2014 at 7:00pm. Lakeview Harbor is located at911 Harrison Ave, New Orleans, LA.

To see the current list of awesome raffle items you could win, visit http://raffle.fitadapted.com.

For more information about LDS, please visit the Loeys-Dietz Syndrome Foundation website.



Fundraising Websites - Crowdrise