matters of heart







february 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.

Registration is required for anyone attending over 2 years of age and includes programming, social events and meals (Friday dinner, Saturday breakfast and lunch, and Sunday breakfast).

Child/teen care is available for children 2-17 years old.

After registering, more information will be provided about booking your hotel rooms at the Holiday Inn Baltimore Inner Harbor.

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


Call in Reservations: 1-800-HOLIDAY or direct 410-685-3500

Rates (plus applicable taxes/surcharges) ar
e good up to 2 nights before/after conference and may be extended upon request: 

Single/Double: $129                
Triple: $139                
Quad: $149

Please contact conference@loeysdietz.org with questions



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!

Everyone loves a potluck, right!? Co nsider having a friendly potluck in honor of your loved one with Loeys-Dietz syndrome. In addition to bringing their favorite food to share, ask guests to consider a donation to LDSF! 

We are grateful to Stacey Levine who just held her second annual potluck in Florida. Once again, it was in honor of her niece, Nicole Reiner, who lives in California. It's wonderful receiving support from families all over the country! 

Please contact fundraising@loeysdietz.org if you are interested in holding an event.


Meeting members of our community:
- Dolores Pope writes about her beloved friend, Victoria

One of the most beautiful gifts another can give to a person is inviting them into their life and this was no truer than if you were invited into the life of Victoria Barillas. Victoria was one of those few unique individuals who the moment you met her enveloped you into her life through her joy of living, her contagious smile, and sheer determination and fearlessness. She was a mix of grit, grace, and sass and what she possessed naturally drew one to her. To be in her presence you would never know the challenges she had faced and overcome during her 27 years. I was one of the fortunate ones to have been invited into her life and through time came to know of her diagnosis first of Marfan's as a child and then three years ago Loeys-Dietz Syndrome.

Victoria and I met through one of our son's. At the time we met our son was dating Victoria and everyone in our family loved her. As with some relationships, their relationship ended. They were both young Victoria just 21 and our son 23. Past experience had told me I wouldn't be seeing much of Victoria anymore since they parted ways, however; Victoria continued to reach out to me and over the course of time she went from calling me by my first name to calling me Mom, even though she and our son were not together. One of her friends had shared with me that she had told Victoria, "Y ou have a relationship with your ex-boyfriend's mom? Isn't that weird?" I was much relieved to learn Victoria's response had been, "No, she isn't like that." Victoria and I came to share a very special bond. In the seven years post break-up that I was blessed to have Victoria in our family's life, I learned first about Marfan syndrome  which was the original diagnosis and then three years ago about Loeys-Dietz when a genetic test confirmed her doctor's suspicions.

 V ictoria had faced challenges in the past, however; when I initially met her she was doing well and it wasn't until her diagnosis of Loeys-Dietz that I became familiar with the effects of this disorder. There were multiple surgeries for aneurysms and hospitalizations for collapsed lungs and all I could think was, "why do more people not know about this condition and why is there not more research being done to prevent these complications?" As I despaired, Victoria was a champion, positive and fearless while lifting others up. As more of the complications presented themselves I saw the depth of her courage as she faced new challenges and met each one head-on with a determination to overcome each one. Additionally, regardless of what she was facing personally, she was always an encouragement to others whether among her family, her friends, and acquaintances or even on the Loeys-Dietz Family Facebook Page. Not only was Victoria an advocate for herself but also for those who shared in this diagnosis with her.

Victoria passed away this past August. In May, Victoria had a ruptured aorta that required her to be medivacked from California to Houston and then back to California in June to continue her recovery at home. Her prognosis was good, we seemed to have gotten over the hump, and our family as well as hers was anticipating a complete recovery so her death took us all completely by surprise. At this point, I could continue on about the sadness and heartbreak we all experienced and the journey of grief we are continuing through. There are valuable lessons to learn in the midst of this time however for now; I prefer to focus on the lessons Victoria taught us by her life and own example; to be an advocate for others in spite of our own challenges, to care for others and bring everyone you meet joy, to be resilient and filled with courage, grit, and grace, and to cling to one's faith while being filled with hope.  

Every now and then you may be invited into the life of another and given the most beautiful gift and over the course of time like me you come to realize it wasn't just a gift but a treasure, a beautiful treasure that touches and impacts your life not temporarily but permanently. All of us who knew and continue to love Victoria would have much preferred a different outcome but she continues on in the lessons and wisdom she imparted to each of us and that also is a gift we now treasure. I am much more aware of Loeys-Dietz and will continue to support the LDS community in whatever way possible along with caring for others by helping in communities stricken by poverty just as she did, and spreading joy wherever I go just as she had. I learned Loeys-Dietz presents challenges but I learned from my relationship with Victoria and her family how we face those challenges makes a difference. To honor Victoria I have vowed to take these nuggets, treasures she openly shared with me; fearlessness, courage, bravery, and live my life in a manner that helps others while bringing joy just as she did. Big shoes as they say to fill but I only hope to do it as well as she did.