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Schizencephaly/RARE 2016 Convention

09.23.2016 @ 9:00 AM - 09.25.2016 @ 9:00 AM

You Must go to the event page and register so we can document the number of people attending.

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As a Surprise for our families attending this sold out convention….We are taking you all to Disney!!

HONG KONG - SEPTEMBER 1: (EDITORIAL USE ONLY) In this handout photo provided by Disney, Mickey and Minnie Mouse are seen in front of the Sleeping Beauty Castle at the new Disneyland Park on September 1, 2005 in Hong Kong. The new theme park and vacation resort will officially open September 12. (Photo by Mark Ashman/Disney via Getty Images)

walt disney world - magic kingdom castle fireworks

2016 First Schizencephaly Convention Orlando Florida hosted by we are RARE and the Avanti resort.

Speakers and guest line up is complete.

See our video

Join us for our first ever Schizencephaly family convention in Orlando Florida Sept 23 through the 25. 2016 for our first convention including guest speakers, medical professionals, therapists and vendors.



I’m Aware We Are RARE

Convention Itinerary

Friday Sept 23

8 a.m. Family meet and greet in the commons

Pool area and cabana

Friday Sept 23 9 A.M breakfast         

Not provided by RARE Across the street at Dennys

Presentations for Friday

10 a.m.  Special needs Trust and wills

 11:00 a.m. Dr. Lauren Nickens

Celebration Family Chiropractic

Will be joining our line of vendors and speakers on ways to control scoliosis. Screenings and evaluations will be on site for Friday and Saturday

11:45 a.m Florida


Editor in Chief at Florida’s largest online cannabis culture website.

1:30 p.m. Regina Nelson CEO at The ECS Therapy Center PhD


In depth look at Schizencephaly seizures Author, Student, CEO, Medical Consultant

3:00 p.m. Dr. Jose Herrera-Soto

Herrera Soto_Jose_web2

Dr. Herrera-Soto is an Orthopedic surgeon in Orlando, Florida and is affiliated with Orlando Regional Medical Center. Dr. Herrera-Soto trained in Puerto Rico and Cincinnati. Then he was on the faculty at Penn State University prior to joining Orlando health. Dr. Herrera-Soto is an accomplished spine surgeon He also recently completed a special fellowship in Switzerland where he studied new methods for complex hip surgery and in children and young adults with early onset arthritis. He has published several scientific papers in peer-reviewed journals and has been a speaker at national and international meetings. American Academy of Orthopaedic Surgeons Pediatric Orthopedic Society of North America

European Pediatric Orthopaedic Society Scoliosis Research Society Specific training in hip dysplasia.  

5:00 p.m. vision discussion Lighthouse for the blind

lighthouse central florida

Vision therapy information. Early intervention and child development for vision impairment.


Saturday Presentations

10:00 a.m. Whole food Blends presentation with Vitamix


Three meals prepared for blending alongside Vitamix. You must be at the entire presentation and education portion to be placed in the raffle for the Vitamix Blender whole food industrial Blender giveaway (provided by RARE and donated by Vitamix) those that have been provided a blender from RARE in the past are not eligible for this.

11:30 Pathogend


Whole hospital room bio decontamination company

12:00 p.m. Island dolphin care presentation


Stephanie Bishop, Tricia Dennis

located in Key Largo Florida IDC integrates dolphin therapy and SP, OT  

1:30 p.m. DoTerra essential oils

3:30 p.m. Unilateral Adult Panel * Must see*

Our adult panel will discuss their experiences with Schizencephaly and how to assist your child through life. (explanations on what seizures feel like) Auras, behaviors and discussions on those that went through surgery to eliminate seizures

Speakers: Paul Fincher, Heather Leigh, Amanda Kirspel

7:00 p.m. Italian Dinner Provided by We Are RARE

Special videos

Drawings and winners announced.

500.00 cruise

300.00 cruise

*Presentations begin at 10 a.m. Friday Morning. Vendors will be there 9: a.m.-9 p.m. Friday & 9a.m.- 6 p.m. Saturday

 There will be arts and crafts available for smaller children as we ask during our presentations to limit traffic and noise.

Sunday Sept 25

Meetup at Denny’s not provided by RARE

(across the street from Avanti resort)

Sunday we go to DISNEY!!


We will have 20+ vendors happening all day Friday and Saturday. They will give presentations and helpful info.

Some in attendance confirmed, Water filter system, wheelchair  

Accessible vans, air purifiers, Vitamins, many more!

Event will be filmed by local media for future documentary.

Thank you to the support of our sponsors that are making this event a family success.

I’m AWARE We are RARE!!!






09.23.2016 @ 9:00 AM
09.25.2016 @ 9:00 AM


Unnamed Organizer


Schizencephaly Orlando convention
orlando, FL United States + Google Map