Join us for the Moebius virtual event of the year!

We don’t need to wait until 2021 to connect! The Moebius Syndrome Foundation will be providing a week of FREE virtual sessions this July 13-17, 2020 to help educate, encourage, and connect the Moebius community.

Registration links for these virtual sessions will be made available closer to the event week. The Moebius Syndrome Foundation will post instructions for accessing these sessions closer to date through email, social media, and this website.

Download a copy of the current agenda here.

Monday, July 13th

• 10:00 AM CST – Fitness for All, directed by KiOwana Phillips
• 11:00 Am CST – Adaptive Technology, directed by Alex Barker
• 1:00 PM CST – Moebius Syndrome Research updates
• 3:00 PM CST – Just for Moms chat, moderated by Sharon Deveney

Tuesday, July 14th

• 4:00 PM CST – Happy Hour / Bingo, moderated by Kelsey Ferrill and Jenny Whitman
• 6:00 PM CST – Scientific Advisory Board Q&A session, moderated by Vicki McCarrell
• 8:00 PM CST – Just for Dads chat, moderated by Will Harrison

Wednesday, July 15th

• 10:00 AM CST – Just for Parents of Medically Complex Children chat, moderated by Nicole Zeitler, Moebius Syndrome Foundation Board Member
• 1:00 PM CST – Your Personal Image, by Susana Romero
• 3:00 PM CST – A Bright Future: Looking Beyond Moebius Syndrome, by Austin Halls, Jessica Maher, Kevin Smant, PhD, Emoni Williams
• 5:30 PM CST – Happy Hour / Trivia

Thursday, July 16th

• 9:00 AM CST – Coping Strategies to get through difficult times, directed by Dr. Leah Stock-Landis, PhD
• 11:00 AM CST – Just for Women chat, moderated by Dr. Kathleen Bogart, Moebius Syndrome Foundation Scientific Advisory Member
• 5:00 PM CST – Turning Adversity Into Your Greatest Strength, by Sean Barnes
• 6:30 PM CST – Just for Men chat, moderated by Steven Maldonado, Moebius Syndrome Foundation Board Member

Friday, July 17th

• 10:00 AM CST – Just for Canadians chat session, moderated by Kelsey Ferrill, Moebius Syndrome Foundation Board Member
• 12:00 PM CST – Art Journaling: A Creative Writing Session, moderated by Lisa Smant
• 3:00 PM CST – Just for Teens chat session, moderated by Austin Halls
• 6:00 PM CST – Talent Show with performances by children, teens, and adults with Moebius syndrome

*Dates and times of presentations are subject to change, as well as content. These will become firm closer to date and will be updated on this website as well as email, and post updates in the Moebius Syndrome Foundation social media pages.

Speakers

The Moebius Syndrome Foundation has so many talented and wonderful speakers participating in this event! We are grateful for those donating their time to the Moebius community.

Fitness Session for All

by KiOwana Phillips, Master Fitness Instructor

KiOwana Phillips is a wife, mom of 2 boys, and a fur mom of three dogs. She’s a Soldier, Philanthropist, Published Author, Moebius Syndrome Advocate & Coordinator, Independent Travel Agent, Master Fitness Trainer, Health & Fitness Coach, and Real Estate investor. KiOwana has an older son (Khaleb) with Moebius Syndrome and their family has been active in the Moebius Syndrome community for 15 years.

Moebius Syndrome Research Updates

by Dr. Elizabeth Engle, MD, Dr. Ethylin Jabs, MD, Dr. Irini Manoli, MD, and Dr. Bryn Webb, MD

Scientific Advisory Board Q&A

Dr. Kathleen Bogart, PhD., Dr. Gregory Borschel, MD., Hollis Chaney, MD,  Jackie Diels, OT, Dr. Elizabeth Engle, MD, Dr. David Hunter, MD, Dr. Ethylin Jabs, MD, Dr. Philip McClure, MD, MD, Dr. Marilyn Miller, MD, Dr. Richard Redett, MD, Renee Roy-Hill, MS – CCC/SLP, Dr. Rhonda Robert, PhD, Dr. Ronald Zuker, MD

Susana Romero

Susana Romero was born with Moebius syndrome in Caracas, Venezuela, on July 9th, 1957. She has been happily married for 34 years, graduated as a Civil Engineer from the Central University of Venezuela (1983) and worked for 25 years in the Ministry of Transportation and Communications. 

Susana recently earned a degree from Teachers Online and has prepared a master class online to help people understand how to help children with disabilities. She wrote the autobiographical book, SuSana (English and Spanish) and has given lectures about Moebius in the USA, Belgium, Argentina, Ecuador, and Spain. She works to collect data on children with special conditions, gives online workshops, and is the designer of ‘THE BAG FOR HAPPY THERAPY.’

A Bright Future: Looking Beyond Moebius Syndrome

Austin Halls, Jessica Maher, Dr. Kevin Smant, PhD., and Emoni Williams

Kevin Smant is the vice-president of the Moebius Syndrome Foundation, and is a history instructor for Tarrant County College, the University of Texas at Arlington, and Southern New Hampshire University.

Emoni Williams is 25 years old. She was born and raised in Detroit, MI. After moving in and out of state, Emoni decided to stay to purse her career in the law field and is currently attending two colleges. She has three sisters and one brother and is the oldest of all her siblings, whom she loves dearly. Emoni’s favorite colors are red, pink, and black. She has a passion for educating people about how important Moebius syndrome is to herself, as well as her fellow peers.

Turn Adversity Into Your Greatest Strength

Sean Barnes

Sean Barnes resides in Toronto, Canada but originally from Scotland. He is a huge love and passion for fitness and sports as well as self-improvement. He is continuously focused on helping and serving others.

Coping Strategies to Get Through Difficult Times

Dr. Leah Stock-Landis, PhD.

Dr. Leah Stock-Landis is a clinical psychologist with 20+ years experience in clinical, administrative and academic settings. She has specializations in CBT, CBT-I, DBT, CPT and MI. Underlying all is the appreciation for the essential nature of the therapeutic alliance. Leah has training and experience in behavioral medicine and substance use treatment. She has training and experience working with adolescents, adults and geriatric populations. Leah is an experienced clinical supervisor as well as educator that embraces the scientist practitioner model and considers that one of her most important gifts is her sense of compassion and empathy.

“Just For” Session Moderators

Just for Women with Moebius, Dr. Kathleen Bogart, PhD

Just for Men with Moebius, Steven Maldonado, MB, member of the Moebius Syndrome Foundation Board 

Just for Teens with Moebius, Austin Halls

Just for Moms of Moebius Children, Sharon Deveney

Just for Dads of Moebius Children, Will Harrison

Just for Parents of Medically Complex Children, Nicole Kovite Zeitler, member of the Moebius Syndrome Foundation Board 

Just for Canadians, Kelsey Ferrill, member of the Moebius Syndrome Foundation Board

Talent Show

Everyone knows that the Moebius community has a lot of talent! Here’s your chance to show your skills. We invite everyone that has Moebius syndrome and is interested in participating in this virtual talent show, to please join us as we connect and spread joy! We encourage all ages to participate. The Moebius Syndrome Foundation Talent Shows are always a safe and positive place to let talents shine.

Each participant will have up to 3 minutes to perform their talent. Although the talent show will be broadcast on Facebook Live, talent videos will be pre-recorded and emailed to jenny@moebiussyndrome.org no later than June 15, 2020. Participants must include their name, age (optional), and talent they will be performing. Please email jenny@moebiussyndrome.org to sign-up.

Game Night

Let’s play some games! The Moebius Syndrome Foundation will be hosting two different game nights including Bingo, and a Trivia game.

There will be a few small prizes for the winners!