July 8, 2021
July 9, 2021
July 10, 2021
July 11, 2021

Pediatric Gastrointestinal Issues Q&A

Listen to a short presentation and ask your questions via chat about GI issues in children with connective tissue conditions.

  • Recorded
  • 9:00 am-10:00 am ET

Support for Moms

Space to talk, share your concerns and feelings, and offer advice with other mothers of children and teens with a connective tissue condition (Marfan, VEDS, Loeys-Dietz, or related conditions). Th…

  • Not Recorded
  • 9:00 am-10:00 am ET

What is New in Stickler Research?

Learn about a new laser treatment to prevent retinal detachment and prevent blindness in Stickler syndrome.

  • Recorded
  • 12:00 pm-1:00 pm ET

Italian Programming

Learn about two types of common aortic surgeries for Marfan syndrome and Loeys-Dietz: aortic root surgery and valve replacement surgery.

  • Recorded
  • 12:00 pm-1:00 pm ET

French Programming

Learn about three types of common cardiac surgeries for Marfan syndrome and Loeys-Dietz: aortic root surgery, valve replacement surgery, and open thoracoabdominal abdominal repair.

  • Recorded
  • 12:00 pm-1:00 pm ET

Art Class for Kids

Want your child to explore their artistic side? Have your child join artist Kristi Posival for an art class for kids! This class weaves together the use of a wide range of art materials with steps to…

  • Not Recorded
  • 12:00 pm-1:00 pm ET

Testosterone and Puberty with VEDS

Do you have a child with VEDS? Are you worried about testosterone and puberty in relation to your child's health? This session provides medical information, an opportunity to ask questions, and a…

  • Recorded
  • 12:00 pm-1:00 pm ET

Growing Older with a Connective Tissue Condition

As you approach your middle to later years, you realize that some of your medical issues have exacerbated while new ones have interfered with your daily life. Learn more about some of the medical issu…

  • Recorded
  • 3:00 pm-4:00 pm ET

What's New in Loeys-Dietz Syndrome Research Q&A

Ask your questions via chat to the scientists involved in genetics, bone, hearing, and tooth development research.  Please view pre-recorded video before attending live Q and A session.

  • Recorded
  • 3:00 pm-4:00 pm ET

German Programming

Learn about the signs and symptoms of aortic dissection and how to advocate for yourself in the hospital emergency department.

  • Recorded
  • 3:00 pm-4:00 pm ET

Knitting Nook

Get together with those who love to knit and those who want to learn to discuss current projects, favorite patterns, and where to get the best yarn. Join this informal get-togetherer and knit away you…

  • Not Recorded
  • 3:00 pm-4:00 pm ET

Young Adult Panel for Teens

Teens, age 13-18, are invited to attend a discussion featuring a panel of young adults in the aortic conditions community. The young adults will provide insights and advice for accepting their diagnos…

  • Recorded
  • 7:30 pm-8:30 pm ET

Support Group for Unaffected Partners/Spouses

Participate in this session to talk about challenges and coping strategies with other unaffected partners/spouses. Please note: Participation is open to any connective tissue condition, but is limited…

  • Not Recorded
  • 7:30 pm-8:30 pm ET

What's New in Marfan Research?

Hear the latest in Marfan research from leading investigators and ask your questions via chat.

  • Recorded
  • 7:30 pm-8:30 pm ET

Support Group for Dads

Share your concerns with other fathers of children and teens with a connective tissue condition (Marfan, VEDS, Loeys-Dietz, and related conditions). There are many ways to be a dad! Please join if…

  • Not Recorded
  • 9:00 am-10:00 am ET

Lungs Q & A with Enid Neptune

Do you have questions about lung issues and Marfan, LDS, and VEDS? Watch Dr. Neptune's previous presentations in advance and then bring your questions to this session.

  • Recorded
  • 9:00 am-10:00 am ET

Eye Health in VEDS

Hear a short presentation about managing dryness, corneal abrasions, and other issues that arise from sleeping with your eyes open.  What is keratoconus and how might it affect people with VEDS?  Wh…

  • Recorded
  • 9:00 am-10:00 am ET

Eating to Gain Weight for Children

Are you concerned about your child's weight? This session will provide the basics of good nutrition with emphasis on nutrient-rich and calorie-rich foods, ways to optimize…

  • Recorded
  • 9:00 am-10:00 am ET

Caregiver Burnout

Caregivers are not typically prepared to deal with the impact of long-term care of a family member with a chronic, progressive condition. The emotional toll can be devastating. In this session, you&am…

  • Recorded
  • 10:30 am-11:30 am ET

Cooking Corner (Recipe Swap)

It's not too hot to get in this kitchen! Join the fun for a recipe exchange and discussion on the love of cooking. Bring your favorite dishes and snacks to our virtual table to share and …

  • Not Recorded
  • 12:00 pm-1:00 pm ET

Allergy and Nutritional Issues Q & A (LDS)

Listen to a short presentation and then get your questions answered about food, skin, environmental allergies, and what association some of these could have to nutrition.

  • Recorded
  • 12:00 pm-1:00 pm ET

Newly Diagnosed with Loeys-Dietz Syndrome

Learning everything about a condition like Loeys-Dietz can be daunting at first. Hear from leading experts in LDS care, management, and genetics, and get your questions answered questions during this …

  • Recorded
  • 2:00 pm-3:00 pm ET

Teen Chat

Teens, ages 13-18, are invited to join this virtual get-together to connect with other teens with Marfan, LDS, VEDS, and related conditions. This informal gathering provides an opportunity to talk abo…

  • Not Recorded
  • 3:00 pm-4:00 pm ET

Neonatal Marfan Syndrome Q&A

Listen to a short presentation on children with neonatal Marfan syndrome and ask your questions via the chat box.

  • Recorded
  • 3:00 pm-4:00 pm ET

Demystifying the Hospital

The hospital can be a scary place when you are facing surgery. In this session, you will learn some of the basics of the hospital, helpful terminology, and other practical advice from medical professi…

  • Recorded
  • 3:30 pm-4:30 pm ET

Welcome! Red Carpet Rollout & Awards Ceremony

Break out your best red carpet looks for the party of the summer! A celebration for the full Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions community with music, games, and recognition of…

  • Recorded
  • 7:30 pm-8:30 pm ET

Young Adult Mixer

If you are between the ages of 19 and 30, please join this social opportunity for our young adult community to get together for networking and conversation. Meet other young adults with Marfan, LDS, V…

  • Not Recorded
  • 9:00 pm-10:00 pm ET

Spanish Programming

Learn about three types of common cardiac surgeries for Marfan syndrome and Loeys-Dietz: aortic root surgery, valve replacement surgery, and open thoracoabdominal abdominal repair.

  • Recorded
  • 9:00 am-10:00 am ET

Gentle Yoga

Linda Mills, EYT500 and Yoga Therapist IAYT, will provide a one hour gentle yoga class. The first half hour will be in a chair. A yoga strap, a man’s tie, or a bathrobe sash would be helpful to as…

  • Not Recorded
  • 9:00 am-10:00 am ET

Help for the Newly Diagnosed with Marfan Syndrome

Have you been diagnosed with Marfan syndrome within the last year? You may have concerns about your cardiac care and follow up with other medical issues. Join this session and have your questions answ…

  • Recorded
  • 9:00 am-10:00 am ET

Support for Unaffected Partners/Spouses

Participate in this session to talk about challenges and coping strategies with other unaffected partners/spouses. Please note: Participation is open to any connective tissue condition, but is limited…

  • Not Recorded
  • 10:30 am-11:30 am ET

What is Causing my Back Pain?

Not all back pain is the same. Learn how to describe the pain, what the possible causes are, and which doctors to see to get relief.

  • Recorded
  • 10:30 am-11:30 am ET

Art as Therapy

Join artist Kristi Posival in using art as a form of self-expression and communication. In this interactive class session, explore how well-known artists used their physical and mental challenges as a…

  • Not Recorded
  • 10:30 am-11:30 am ET

Teen Trivia Time

Are you ready to flex those brain muscles? In this tournament of the minds, teens (age 13-18) are invited to battle it out for the title of Top Trivia Teen! We will feature a series of questions cover…

  • Not Recorded
  • 12:00 pm-1:00 pm ET

VEDS Newly Diagnosed Q&A

Join us for a panel discussion with Dr. Peter Byers, Dr. Sherene Shalhub, and Dr. Shaine Morris to get your questions answered in a newly diagnosed Question and Answer session. Those who are newly dia…

  • Recorded
  • 12:00 pm-1:00 pm ET

Care Model for the BIPOC Community

The Care Model acknowledges social and structural barriers in healthcare and activates patients to lead their own care management. This presentation and discussion will focus on the needs of our BIPOC…

  • Recorded
  • 12:00 pm-1:00 pm ET

Support Group for Stickler Syndrome

Share your concerns and feelings with others who have Stickler syndrome or have a family member with Stickler. Please note: Participation is limited to those who have Stickler or have a family member …

  • Not Recorded
  • 12:00 pm-1:00 pm ET

Support Group for Moms

Space to talk, offer advice, and share your concerns and feelings with other mothers of children and teens with a connective tissue condition (Marfan, VEDS, Loeys-Dietz, or related conditions). The…

  • Not Recorded
  • 12:00 pm-1:00 pm ET

Support Group for Dads

Share your concerns with other fathers of children and teens with a connective tissue condition (Marfan, VEDS, Loeys-Dietz, and related conditions). There are many ways to be a dad! Please join if…

  • Not Recorded
  • 1:30 pm-2:30 pm ET

Emergency Aortic Surgery: Marfan/LDS/VEDS

What would a patient and family expect when needing emergency aortic or arterial surgery? What options would be available to the patient/family if any? How would valve replacement or dissections be …

  • Recorded
  • 1:30 pm-2:30 pm ET

Teen Panel for Parents

It's tough being a teen – let alone one with a chronic illness. It can be even tougher being a parent of a teen. Join us for a candid conversation with our panel of Teen Council members and have …

  • Recorded
  • 1:30 pm-2:30 pm ET

Magic Show with Mario the Maker Magician

You and your family will be dazzled by Mario the Maker Magician in his upbeat and hilarious magic show! Mario will even teach you a thing or two about making magic out of everyday objects. Kids ages 3…

  • Not Recorded
  • 1:30 pm-2:30 pm ET

Singles Support Group

Join this support group to connect with other singles and talk about your issues and concerns. Please note: This session is open to those with any connective tissue condition, but it is limited to sin…

  • Not Recorded
  • 3:30 pm-4:30 pm ET

Loeys-Dietz Syndrome Foundation Prom

Put on your bowtie and sequins (or your favorite pajamas), it’s time for the Loeys-Dietz Syndrome Foundation Prom! Connect with old friends and new for an evening of glamour and fun. Tiaras and jewe…

  • 5:00 pm-7:30 pm ET

Color Your Cares Away – Marfan Mixer

Let’s relax and unwind while getting colorful and checking-in with our Marfan community! Print out a coloring page (or a few!) and grab your pencils, markers, or crayons. We'll chat and hang as…

  • 5:00 pm-6:00 pm ET

VEDS Mixer

This mixer is for all members of the VEDS community to get together for an evening of fun, games, and conversation! Bring your favorite red drink!

  • Not Recorded
  • 5:00 pm-6:00 pm ET

Comedy Show

Laughter is the best medicine! Join us for a fun evening with Andy Erikson, a finalist on NBC's Last Coming Standing, and other comedians who have Marfan syndrome. We look forward to laug…

  • Not Recorded
  • 7:30 pm-8:30 pm ET

Adult Gastro Issues Q & A

Listen to a short presentation and get your questions answered about GI issues such as constipation, reflux, and avoiding perforations in adults with connective tissue conditions.

  • Recorded
  • 9:00 am-10:00 am ET

Chronic Conditions: Strategies for Coping

Just when you or a family member feel like you have adjusted to having a connective tissue condition and are effectively dealing with the medical issues, you face other complications. Join this sessio…

  • Recorded
  • 10:30 am-11:30 am ET

Craft Corner

Bring your own crafting materials and have fun creating your own craft alongside YouTube craft queen Karly Mills! This session will be a place to do crafts and socialize with others who also enjoy mak…

  • Not Recorded
  • 10:30 am-11:30 am ET

Menstruation, Pregnancy, and Menopause with VEDS

Join this session to get your questions answered about menstruation, pregnancy, and menopause with VEDS. This session provides medical information and a forum to share your experiences with others.

  • Not Recorded
  • 10:30 am-11:30 am ET

Treatment of Non-Aortic Aneurysms: Q & A

Aneurysms are most often observed in the aortic root, but can occur in other arteries throughout the body, especially in those affected by Loeys-Dietz syndrome and VEDS. Here is an opportunity to lear…

  • Recorded
  • 12:00 pm-1:00 pm ET

Thinking of Having Children

Learn about the options for family planning and hear real world experiences from couples with Marfan syndrome who have had children naturally, by adoption, through IVF, and using a surrogate. Ask your…

  • Recorded
  • 12:00 pm-1:00 pm ET

Teen Activity – Breakfast with the Docs

Calling all teens age 13-18! Get your questions answered by experts on our PAB and SAB over breakfast. Teens can submit their questions annonymously or through the sessions chat feature.

  • Not Recorded
  • 12:00 pm-1:00 pm ET

Support Group for Neonatal Marfan Syndrome

Share your concerns with other parents of children with neonatal Marfan syndrome. Please note: Participation is limited to parents of those with neonatal Marfan syndrome.

  • Not Recorded
  • 1:30 pm-2:30 pm ET

Pet Party

Show off your pet! Join us for games and contests to give your pet the screen time they crave! Grab your favorite furry friend and let's go on a doggy date! Enjoy show and tell with your animal p…

  • Not Recorded
  • 1:30 pm-2:30 pm ET

Two Disabled Dudes: Living Beyond Your Circumstances

Join us for this uplifting panel discussion led by the Two Disabled Dudes – two incredible motivational speakers, Kyle and Sean, who are also in the rare disease community. They are known for their in…

  • Recorded
  • 2:30 pm-4:00 pm ET