Thank you for joining us for the Moebius virtual event of the year! We had a fantastic week, and invite you to view any sessions you may have missed.
- Fitness for All, presented by KiOwana E. Phillips Watch Here
- Adaptive Technology, presented by Alex Barker Watch Here
- Moebius Syndrome Research updates, presented by Drs. Engle, Jabs, Manoli, and Webb Watch Here
- Just for Moms of Moebius Children Chat, moderated by Sharon Deveney (private session)
- Happy Hour / Bingo, moderated by Kelsey Ferrill and Jenny Whitman Watch Here
- Scientific Advisory Board Q&A session, moderated by Vicki McCarrell Watch Here
- Just for Dads of Moebius Children Chat, moderated by Will Harrison (private session)
- Just for Parents of Medically Complex Children Chat, moderated by Nicole Zeitler, Moebius Syndrome Foundation Board Member (private session)
- Your Personal Image, presented by Susana Romero Watch Here
- A Bright Future: Looking Beyond Moebius Syndrome, by Austin Halls, Jessica Maher, Kevin Smant, PhD, Emoni Williams Watch Here
- Coping Strategies to get through difficult times, presented by Dr. Leah Stock-Landis, PhD Watch Here
- Just for Women with Moebius chat, moderated by Dr. Kathleen Bogart, Moebius Syndrome Foundation Scientific Advisory Member (private session)
- Moebius Syndrome Frame Film Watch Here
- Just for Men with Moebius chat, moderated by Steven Maldonado, Moebius Syndrome Foundation Board Member (private session)
- Just for Canadians chat session, moderated by Kelsey Ferrill, Moebius Syndrome Foundation Board Member (private session)
- Art Journaling: A Creative Writing Session, presented by Lisa Smant Watch Here
- Just for Teens with Moebius Chat session, moderated by Austin Halls (private session)
- Well Being of Parents Within the Moebius Community, presented by Will Harrison Watch Here
- Talent Show with performances by children, teens, and adults with Moebius syndrome Watch Here
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 E. 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. KiOwana will be directing us in a low-impact, total body workout that can be adapted to different abilities. All that is needed for the workout are two water bottles.
by Alex Barker
Alex Barker is a professional in adaptive technology with 20 years experience in the field. He is married to Erin Barker and lives in the United Kingdom. Alex has Moebius syndrome and is passionate about helping others with Moebius live their best lives.
Moebius Syndrome Research Updates
by Dr. Elizabeth Engle, MD, Dr. Ethylin Jabs, MD, Dr. Irini Manoli, MD, and Dr. Bryn Webb, MD
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 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
Austin Halls is a 22 year old inspirational life coach who spreads self-love and lessons on how to live your truth. Austin just graduated Montclair State University with a degree in psychology, and a minor in sociology. He is continuing his education for his master’s degree, and is very excited to continue his journey helping others.
Jessica Maher is a 19 year old college student at Pasco Hernando State College in Florida. She is currently studying to be an elementary school teacher and is on her second year of her Associates degree. Jessica has been involved with the Moebius Syndrome Foundation since 2002, and has advocated on behalf of people with Moebius Syndrome for many years. In her free time, she likes to read novels, write poetry and short stories, as well as exercise. Jessica has practiced karate since age 6, competed in several tournaments, and earned her black belt in December 2018. She is looking forward to participating in this year’s virtual conference.
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.
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.
Join Lisa Smant for a relaxing and creative hour of art journaling! At the bare minimum, you will need a pen and piece of paper (if you haven’t committed to a journal yet); as well as a glass of water. Besides that – the possibilities are endless, you may want colored pencils or fancy water color pens. Let this link inspire you – but remember you do not need these things at all – https://joyfulartjournaling.com/the-ultimate-list-of-art-journal-supplies/ And art supplies can sadly get really pricey! If you want to explore different types of journals, take a look at this link – https://artjournalist.com/best-journals-for-art-journaling/
Well Being of Parents Within the Moebius Community
Will is an adult with Moebius Syndrome. Will has been married to his wife Heather for 14 years and has 5 kids ranging in ages 4 to 12. Will is a Masters level social worker who is currently working with adults with developmental disabilities. He is passionate about helping parents advocate for their kids as he has a son with Autism, a son with Chiari malformation and two daughters with Pierre Robin Sequence. Will is currently on the board for The Many Faces of Moebius Syndrome and also serves on Michigan’s Statewide Independent Living Council. In his free time will enjoys coffee, the outdoors, and a good book.
“Just For” Session Moderators
Just for Women with Moebius, Dr. Kathleen Bogart, PhD, member of the Moebius Syndrome Foundation Scientific Advisory Board
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