October 10, 2017
Dear Honorable Congressman, Senator, and other Legislators:
On behalf of We Are Rare, Inc., we are pleased to invite you to attend our 2017 Convention titled “We Are Rare, My Beautiful Brain”, to learn about Schizencephaly and other rare brain malformations. The meeting will be held in Orlando, Florida on October 20-21, 2017, at the Holiday Inn and Suites, Grand Ballroom, 5905 South Kirkman Road. Sessions run consecutively from 8:00am-4:30pm.
Schizencephaly is caused by an in-utero stroke in the first trimester of birth and results in substantial areas of brain matter not forming, over 50% in some cases. The mortality rate is high, and for the children that do survive, they suffer from many co-morbidities the most common of which are intractable and uncontrollable seizures. These seizures can often lead to the patient being placed in a medical coma, in an attempt to stop the seizures, and many never wake up.
The challenges these patients and their families face in finding effective and humane treatment from the medical community, and the personal sacrifice families often find themselves making in order to survive, will astound you. Many parents must make a difficult life choice to become medical refugees as they desperately seek out access to medical cannabis. Also called medical marijuana, it is often the only medicine working after failure of over 15+ pharmaceutical drugs, in order to save their child’s life.
Florida Representative Carlos G. Smith will be in attendance and speaking about cannabis reform. Therefore, we want to invite representatives from all legislative bodies to get to know this subject from those it most closely affects – the patients, children and young adults, and their families.
We would truly be honored to have you attend and meet the families and children/young adults that live with missing brain matter. Listen to them talk about the only help they’ve found, and why it is inhumane to deny these patients access to medical cannabis anywhere in their own home state or nationwide. Listen as three moms come forward and speak out, publicly, 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, often despite the laws. You have the power to show compassion and work to reform cannabis, both here at home in Florida, as well as across the nation.
Founder, We Are R.A.R.E.
Co-founder, We Are R.A.R.E.
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.
Please visit the website at http://wearerare.org/2017-convention for more information on the organization. A complete list of times and speakers is attached.