2017 RARE convention press release








We Are R.A.R.E. Convention 2017: “My Beautiful Brain”
Focus on Neurology, Cannabis case studies, education and treatment


Orlando, Florida: We Are R.A.R.E., Inc. will be holding their 2017 “We Are RARE, My Beautiful Brain” convention in Orlando, Florida on October 20-22, 2017, at the Holiday Inn and Suites, Grand Ballroom, 5905 South Kirkman Road. This year’s convention will be focusing on Neurology, Cannabis case studies, education for traumatic brain injury, and treatment for underlying conditions associated with Schizencephaly and other rare brain malformations, seizures, and Cerebral Palsy. A total of 400 to 500 attendees are expected this convention, some whom are coming for legislative information for their own diseases and conditions. The doors are open for all to be educated about their family’s healthcare.

The underlying conditions associated with Schizencephaly can be varying in degenerative attributes. For that reason, many conditions will benefit from this convention. Some of the topics include muscle tightness, seizures, bone health, upper/lower gastrointestinal, and respiratory conditions that can often develop as an underlying, sometimes degenerative, condition(s) to Schizencephaly and other disorders.

The convention will cover many topics, but one of the key topics and discussions will be cannabis and how children and adults are going weeks to months seizure/pain free on cannabis even though they are missing substantial areas of the brain, over 50% in some cases.

Families will be traveling from across the globe to attend and gather as much information to make the life choices they are facing with rare disorders pertaining to intractable and uncontrolled seizures, including brave refugees speaking about their treatments with cannabis and how it is the only medicine working for control after failure of over 15+ pharmaceutical drugs.

Please visit the website at for a complete list of times and speakers.

Included speakers:
• Three moms that will be coming forward and speaking out for the first time about cannabis. Their stories are gripping as they all had to make sacrifices to do what was best for their children.
• State Representative Carlos Guillermo Smith
• Regina Nelson PHD
• Dr. Robert Scott Bell
• Former Judge Doug Bench
• Janel Ralph
• Dr. Jose Rosado
• Cannabis Life Radio
• Minardi Law


A large media presence is expected, especially for refugee speakers and the adult panel.

On Sunday, October 22, R.A.R.E. is partnering with Give Kids the World’s Compassionate Care Program Department and will take 163 family members to local theme parks as a celebration of life and this convention.

About We Are R.A.R.E., Inc.: Established in 2011, We Are R.A.R.E., Inc. is a 501(c)(3) initiative made up of experts in rare brain anomalies, such as Schizencephaly. Comprised of parents with family members facing these challenges, and aimed at providing research, awareness, and education about fetal stroke issues, intractable seizures, and cannabis education, the Foundation works with families of children and young adults who suffered a stroke or disturbance at some point during brain development within the first trimester of pregnancy.

Media Inquiries:
Tricia Dennis We Are R.A.R.E.

Ron Casella


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