Announcing the first Texas vEDS Families mini-conference to be held April 14 & 15, 2018!

Where: Sam Houston State University

When: April 14 and April 15, 2018

What is it?

This will be a time to get to know each other and to ask questions to the people who can answer them best. At the conference, attendees will be asked you a few questions so the experts can know how they can best help you navigating life with vEDS. On Saturday, we will start at 9:00 AM and plan to spend the day together getting to know one another and answering questions we can answer and trying to find answers for those we cannot Special safe activities are planned for your children so adults can spend time together and the kids will not be bored. SHSU has an adaptive gym and has an adaptive kinesiology program where college students learn to work with kids who cannot participate in regular physical education activities. Saturday will be a full day for both adults and children. This is your chance to let the world know about vEDS and to help spread awareness.

Because you will have Saturday with various experts in the field of health, Sunday morning is reserved for people and families impacted with vEDS. While SHSU’s hope is that you feel comfortable asking questions of our experts, we understand that sometimes, you will want to share with each other and get to know one another better. We will probably collect some information from you on Sunday to let us know how we can improve this conference for coming years. The conference should finish around 11:30 AM Sunday so those traveling far can make it home before it gets late.

Who will be there:

The confirmations that we have at this time include, Dr. Peter Byers, who is a renowned geneticist who specializes in the genetics of vEDS, Dr. Sherene Shalhub who is a noted vascular surgeon who specializes in working with vEDS and Dr. Shaine Morris and her team, a pediatric cardiovascular physician who is well-known for her work in children with vEDS. Other experts who are members of the SHSU faculty and who will participate in the conference will be Dr. Simone Camel (a dietitian), Dr. Hillary Langley (a human development specialist), Dr. Gary Oden (a cardiovascular exercise physiologist), Dr. Kevin Randall (a family life specialist and a parent of a special needs child), Dr. Christine Cardinal (an attorney who specializes in issues with the Americans with Disabilities Act and has a son with a rare genetic disorder), Professor Linda James (an advanced practice nurse who teaches at the SHSU School of Nursing), and Dr. Daphne Fulton (a specialist in health communication issues and Ryan Dolliver’s grandmother).

Where will you stay?

A block of rooms at the University Hotel at Sam Houston State University have been reserved for our guests. You must make your reservation by March 30 to get one of the reserved rooms. You can call them at 936-291- 2151 to make your reservation.

Is there a cost for the conference?

There is no cost for attendance for Texas residents. Costs may include travel and lodging.

For information contact Daphne Fulton at drfulton@ryanschallenge.org

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