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Nonprofit Overview

Mission: We Are R.A.R.E., INC. is a 501(c)(3) company that is comprised of a group of parents who volunteer their time to reach out globally to advocate for rare brain disorders like Schizencephaly, and Microcephaly. We collectively set up events and community & professional education programs throughout the year to help with our efforts. The event registration fees and donations we collect go to help with our organization’s operational cost, advertisement, education seminars for medical and education professionals, advocating for more awareness about rare brain disorders (including but not limiting to Schizencephaly, Microcephaly, and encouraging research by medical professionals through scholarships/grants. All proceeds go back to families and educational training. We are an unpaid board as registered with the federal government

Results: over 57 iPads raised for children. 2014 Senate approved May 19th as national Schizencephaly awareness day thanks to Senator John Hoeven 18 foot banner sailing on the famous Liana's Ransom Publications. Schizencephaly: angels with broken wings Nancy grace award 2008 2016 medical conference Listed on many national health organization websites

Target demographics: Families touched by rare neurological disorders like Schizencephaly

Direct beneficiaries per year: 74

Geographic areas served: Florida

Programs: Fundraisers, Medical training and education, assistance for communication devices and support This year we will be seeking community and US grants to assist in finding researchers

Community Stories

43 Stories from Volunteers, Donors & Supporters

2

Donor

Rating: 4

This is my beautiful granddaughter. She is one of the many faces of Schizencephaly. To find out more about this birth defect, caused by a fetal stroke in utero, you can go to WeAreRare.org. (You can also make a donation to help raise awareness) Although there is no cure for this, raising awareness is vital to understanding what this precious little girl is and will go through during her life. She is part of my heart and soul and I love my tinker bell to the moon

Volunteer

Rating: 5

Now that you've learned a little more about schizencephaly, please consider donating to the nonprofit organization that reaches out to families in need, and supports the research that's on the horizon for our cause.

Client Served

Rating: 5

Hello, I am Carolyn, and I am 64 yrs. old. Before I was born on New Years in 1953, and sometime during my gestational life, I had a stroke. It caused something in me called Schizencephaly and I was in my fifties before being diagnosed with it. I have a small head, low hairline, small features, and the left side of my mouth is slightly higher than the other. I have one pupil smaller than the other also. I have always been clumsy, with balance a little off, and was always the last one chosen for sports during Physical Education. By the time we found out I should have had Adaptive P.E. throughout school, I was already a Junior in High School and so many wasted years had already been lived. I could have been spared the torment of my peers making fun of me just by placement in the proper classes. It did affect me, gave me social anxiety which bothers me to this day. I have had problems with my neck all my life (short neck syndrome too) and just had Cervical Fusion Surgery of C-4, C-5, and C-6. I was losing feeling in my arms and hands and dropping things a lot. That has been fixed. I will always have some degree of Foot Drop, left foot, and have to watch my balance. I have a Diabetic Alert Dog, Regis, who is my Service Dog. Yes, I have Diabetes too. Its a lot to deal with everyday.
I think if people are made aware this condition exists, and it can be diagnosed long before a person hits their fifties, then maybe a lot of prevention can take place in developing other conditions that seem to go with Schizencephaly. To all of you who are my age and have it, I care. To those of you who are raising children with this condition, I was one of them. As an adult with the condition, I reach out to those children and adults and say, "I am one of you."

1 Lori177

Client Served

Rating: 5

Our grandson was diagnosed at 4 months (3 yrs and 2 mo ago). My daughter's pediatrician not only couldn't pronounce it she had no idea what it was and told us to "wait till Monday and call someone." Thanks to Tricia and this group of people we may be rare but we are not alone. We learned more from this organization than the doctors we first contacted. We never have to go through any of Andrew's diagnosis alone. As Andrew continues to learn and grow we continue to educate and spread awareness. Thank you Tricia and We Are Rare for giving hope to all those facing the unknown. God bless us all!

3

Donor

Rating: 5

I've known the founder Tricia since we were in high school. You'll never see passion like hers in everything she does.
She has always been that person people went to for advice and it's clear she's made it her life mission to stay that way with her son's disorder.
She and the board she works with all pull things together and stay active in the community raising awareness

3

Client Served

Rating: 5

When we were in the hospital this year we were constantly being checked in and provided a hand out sheet from this foundation to give to the hospital.
It helped so much and helped them understand how Schizencephaly works

3

General Member of the Public

Rating: 5

Thank you RARE for helping me understand the blended diet and seizures my daughter has

3 Taylor26

General Member of the Public

Rating: 5

We Are ARE has provided myself and my daughter's family so much information and resources for her condition. The support within the community of parents and family of loved ones diagnosed with schizencephaly has gotten me through very difficult times and the knowledge shared has made me feel informed, prepared, and also helped me become the passionate advocate I am today for my daughter's condition. I am so grateful for this organization.

3 Kristine21

Board Member

Rating: 5

This non-profit has been a beacon of hope and support. The information provided and support offered were pivotal in learning about and coping with my son's diagnosis of Schizencephaly. They are compassionate, responsive, and insightful. I'm now fortunate enough to be part of the team and to provide support for families coping with a diagnosis of severe Schizencephaly. Fantastic organization!

3

Client Served

Rating: 5

Not sure where we would all be without the support an encouragement from this organization it has been wonderful and they are extremely informative about Schizencephaly which is not a well known ir researched issue. This organization is Amazing