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2018 Top-Rated Nonprofit

We Are RARE

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Nonprofit Overview

Causes: Human Service Organizations, Human Services

Mission: We Are RARE 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/2017 rare convention Listed on many national health organization websites

Target demographics: Families touched by rare neurological disorders like Schizencephaly

Direct beneficiaries per year: 388 families

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

65 Stories from Volunteers, Donors & Supporters

3

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

General Member of the Public

Rating: 5

We just want to say thank you for understanding the need for awareness for Lissencephaly
It's so wonderful to have awareenss and colors to share.
You all are great

1

Client Served

Rating: 5

Got a call the same day I emailed and received enough information to talk to my family doctor.
It feels great to know there is help out there

1 Holly M.1

General Member of the Public

Rating: 5

We Are Rare and the other groups associated with, has been my go to over what the doctors do or don't say. My grandson's care providers did their job, well, for the first 6 months+ of his life, but they were not informative of Schizencephaly and I had to do mostly all of my own research. Thank goodness I found WeAreRare.org upon the first page of Google! I hope to one day travel and attend an event or conference, or even just families of others affiliated with the organization.

1 Taylor26

General Member of the Public

Rating: 5

I feel so fortunate to have come across We are RARE a few years ago. I have been blessed with connecting with other parents whose child share the same diagnosis, with valuable knowledge and information including resources for my child, and the amazing opportunity to attend a very well organized conference with guest speakers to learn more about schizencephaly. Thank you!

Previous Stories
4

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.

1

Client Served

Rating: 5

Great advice on transition to whole food diets. Life changing and our Chloe is doing wonderful

1

General Member of the Public

Rating: 5

I am so grateful for this organization. It has helped me to become very knowledgeable for things for my son.

1 Summer L.

General Member of the Public

Rating: 5

Tricia is a fabulous woman. She’s established a great nonprofit that is helping lots of people around the world. Tricia reaches out to lend a hand to help with other causes as well. I am extremely grateful for all of her work and kind heart.

1

Client Served

Rating: 5

learned so much about my son through Tricia. She gave us some great advice on helping our son open his hands, Now he's grabbing for toys.
We hope to make it to the next conventions

1

Volunteer

Rating: 5

We have nothing but wonderful things to say about what this organization taught me at the convention. Thanks you so much

Professional with expertise in this field

Rating: 5

Thank you from the Lissencephaly community! And all you at RARE do.

2

Professional with expertise in this field

Rating: 5

The medical profession can learn a lot from your organization. I know I have.
It's wonderful to see families come together through a difficult diagnosis.
It does not go unrecognized

1

Board Member

Rating: 5

Knowing the founder and the time and effort she gives while taking care of her own son with bilateral schizencephaly, it's proof angels do exist.
Each volunteer puts a lot of effort into the work behind what RARE does
That's a family within a family within a family.
Schizeption

1

Board Member

Rating: 5

Working with this organization for over a year it's been a great honor to get to know familes and stories.
Looking forward to this year's convention

1

Donor

Rating: 5

Keep up the terrific work in the community and with families.
It's an honor to work wit a foundation that is about helping educate this world.

1

Donor

Rating: 5

We are excited to meet other families at the convention this year. None of that would be possible without WeAreRare.
Thank you for your hard work and all you do

1

Client Served

Rating: 5

Love light and strength in knowledge. This organization took a bleak diagnosis and Gave us the strength and knowledge to feel empowered.
This year we celevated our first schizencephaly awareness day with thousands of families worldwide
How's that for support.
Thanks to all the great people behind we are rare and paving the way for us to celevate this life not listen to what the doctors tried to tell us.
Our daughter wasn't supposed to be here. It was rare that walked me through that first year and for that we are ready always going to be greatful

1

Client Served

Rating: 5

Not only do I understand my child's diagnosis, I now have a group that helps one another find even more answers
The first day I emailed we are rare they called that same day. We don't feel alone anymore

1

Volunteer

Rating: 5

Thank you we are rare!
There are no words, only love and respect for all you do for so many

1

Volunteer

Rating: 5

We are never in the dark now..
Walking out with the diagnosis three years ago, I was petrified of my own future and having children
I had genetic testing that could rule out gene mutations and found out mine was an isolated brain injury and stroke.
Today I talk to tricia regularly and anytime I have a question someone from rare always walks me through it and takes time to help me understand. .
For the selflessness these families have in taking time to help others with schizencephaly while they have children with the same disorder or they themselves have it, there are no words. Rare is a beacon of hope for us now.

1

Client Served

Rating: 5

A few months back we had concerns over my sons position and neck curving. This organization got my child a special pillow for better support and positioning.
When we were lost with no ideas they stepped up to find a solution and we now have Gabriel using the pillow all the time. So happy I know the families behind this organization also. It's great that they are active in so many families lives.
Sometimes me and my husband say we have had more support through them than any family or friends . Because they are family to us.
Thank you everyone at we are rare.

Client Served

Rating: 5

This time last year we had no answers and many questions about Schizencephaly and i was guided to this foundation by my doctor.
Today I'm the one educating others about it because I've learned more through we are rare than any doctor told me.
If anything I've had nothing but support and love through every issue I've faced
It's nice to know there is an organization that is there now.

1

Client Served

Rating: 5

I have had so much assistance in understanding my daughter from this foundation.
I appreciate all the helpful information provided about optic nerve damage and how to get vision therapy.
Keep up the great work guys

1

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.

1

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."

3 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 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

3

General Member of the Public

Rating: 5

I've learned so much from we are RARE that I'm able to help provide information to my son's doctors now.
Always there with great support

3

Client Served

Rating: 5

I'd ge lost without this organization. So supportive and insightful
Thank you RARE

4

General Member of the Public

Rating: 5

I am so greatful for this organization! October of 2015 my daughter age 10 at the time had a grandmal seizure. Doctor told me everthing is ok and it sometimes just happen to people once, no big deal she doesn't need meds. A week later same thing happens and now absent seizures. No one can explain it. we get an admit to the hospital and finds out that she was born with bilateral open lip schizencephaly......we were blown away and didint know what to say or do. We were told its little to no information and they could only treat her symptoms on what to come. I prayed vigorously. I real don't like facebook but I knew it had everything. I typed in schizencephaly and found my second family, my refuge, my outlet and support from We Are R.A.R.E. I can't imagine life with this group!

3 Amber95

Client Served

Rating: 5

My daughter Carli is 8 and was diagnosed at 4 months with bi-lateral schizencephaly. R.A.R.E has been such a blessing to our family! In June Carli received her Ipad! She absolutely loves it and we are beyond grateful. This is a way for Carli to start communicating with us and without this awesome non profit it's something that wouldn't of happened. We love Rare and appreciate everything they do, not just for our schiz family, but for thousands of others!

4 Paul175

General Member of the Public

Rating: 5

This group is awesome. They do everything they can to help those with rare complications. Ms. Dennis does everything she can to help while having a child with special needs. They also work very hard to inform professionals and the general public about these rare complications. I am going to be helping them in the future.

3

Client Served

Rating: 5

When we felt alone, We Are RARE was there.
When we needed more than a two paragraph description of Schizencephaly to know what to expect in our future besides death, We Are RARE was there.
When we needed advice, We Are RARE was there.
When we needed help because doctors refused to listen about my child's issues at one of our many hospital stays, We Are RARE called and fought for our child.
When my child was failing to thrive and we needed a blender to start a blended diet and advice on where to begin, We Are RARE got us a blender at no out-of-pocket cost to us, and Tricia was there with recipes and how to start.
And now that we are looking into getting an iPad for our daughter, We Are RARE is working on that.

If this isn't a reliable, caring, and trustworthy organization, I don't know what is. I know where I can always turn when I need help for my child and her disorder.

3 Goldieandrews

Client Served

Rating: 5

Thank you so much for this foundation.
I found out I had unilateral closed lip Schizencephaly in my 30's. My neurologist had no idea about the disorder and we contacted we are RARE.
They were nice enough to send me and my doctor information and brochures that allowed us to find a doctor that was more equipped to understand my seizures.
I appreciate so much the people with rare that went above and beyond to help with my case specifically and took the time to answer our questions.
My family appreciated it as well.
You all are amazing

3 Foreveryoung123

Client Served

Rating: 5

We had a wonderful experience with RARE.
When we did a fundraiser this year they went above and beyond. Not sure about the below comment except that they must not have worked with the foundation personally.
We raised 1200.00 and they sent a check to us within three days for that amount.
Thank you so much for an incredible experience and all the help given.
We look forward to doing another fundraiser in the future.
Wonderful teamwork!

General Member of the Public

Rating: 1

We are Rare is focused on raising funds. As a Non profit the funds raise are not 100% donated back to the family they are raised for. Not sure where the funds are going. My understanding was this Non profit is to be helping fund research and family's effected by Schizencephaly.

3

Client Served

Rating: 5

They never hesitate to answer a call or email.
We are so grateful that RARE was able to provide our family with support as well as help for equiemt we could not get ourselves

3

Board Member

Rating: 5

Working with this foundation I have learned so much about the brain and fetal stroke.
The families and their perseverance never ceases to amaze me. It's an honor to be a part of it all

3

Volunteer

Rating: 5

It's an honor and a privilege to be a part of such an amazing group.

3

Board Member

Rating: 5

My son was diagnosed with absence seizures in 2010. His Eeg showed 200 seizures per day. This was life changing for our family! We have suffered through medicating my child and awful side effects, experiencing breakthrough seizures- absence, atonic, myoclonic, grand mal, petite mal, simple partial, complex partial, generalized, and learning he has brain atrophy. I have advocated for him and learned from every experience, now 5 years later, he is in remission from his seizures!! :)
We have worked closely with nutritionists, geneticists, neurologist, psychologists, pediatricians, schools, attorneys, government, family, friends, and this organization - We Are R.A.R.E., in efforts to get to a place of success and improvement.
I encourage every one to visit our site and see how you can participate.
I am currently a director with the We Are R.A.R.E. board of directors, as of early 2015. #share wearerare.org

3

Volunteer

Rating: 5

The founder, Tricia Dennis is not the type of parent to simply accept defeat. She keeps on fighting and researching to the bone. Much respect and many Thanks!

3

General Member of the Public

Rating: 5

My daughter has schizencephaly and this foundation has been wonderful..so much support and information. Tricia Dennis is amazing, we love her. She's helped so many families.

3

Board Member

Rating: 5

I am so grateful to be a part of this company and helping families.

3

Client Served

Rating: 5

Amazing support when our family did not have answers and needed support
We Love you guys

Previous Stories
3

General Member of the Public

Rating: 5

I cannot thank this company enough for the information and support they have provided me and my child for school.
For many years feeling isolated and stressed I made a call to this company not expecting to hear back right away they returned my call within minutes and helped me get a plan together for my sons therapists and school that has now been implemented and he is doing wonderful.
For a parent facing the unknown they have been so knowledgeable and helpful, more than any doctor we have been to.
An outstanding company!

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much!

3

General Member of the Public

Rating: 5

Thank you so much for being the motivation for so many families

3 Tricia28

General Member of the Public

Rating: 5

We love our families and will continue to do whatever we can to help this dosroder

3 Lisa375

Client Served

Rating: 4

Before finding We are Rare, my family was lost. We are Rare has provided us information that doctors could not even provide. They are not just a non profit organization, they are a family!

Comments ( 1 )

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wearerareTricia 08/10/2014

Oh Lisa. Thank you. We love your amazing family. Big huge hugs

2 Jody30

General Member of the Public

Rating: 4

Hi I'm Jody I live in Canada but follow Tricia very closely because of her knowledge and commitment to her son Noah's disabilities! I have a 7yr (almost 7) great nephew named Noah as well with Schiz and personally have learnt and grand amount from this woman! She is a poster face of this RARE disease and a wealth of knowledge! Please help her Quest for nonprofit and help others like myself and children like both our Noah's get attention they deserve to get research etc whatever needs done...
Thank you Jody McKay

Comments ( 1 )

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wearerareTricia 08/08/2014

Oh Jody, Thank you so much for this incredible review!

4

General Member of the Public

Rating: 5

Before finding We Are Rare I felt so alone. My son was diagnosed with Schizencephaly before birth. There was so little information on schizencephaly. I thought my questions would never be answered about the disease and I thought there would never be help or support. After finding We Are Rare I have been able to breath knowing that there is an active organization that has put schizencephaly on the map. I know We Are Rare will always be a resource, a support system and a backbone to help my son and I through this journey. It's amazing how many people that We Are Rare have helped. I am honored that I can associate with this organization and words can't describe how much better I feel after being connected with the organization.

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much for the amazing review Andrea. We love u

2 Noel3

Volunteer

Rating: 5

I call Tricia "Super Mom" because she not only handles taking care of her own children but she is all about helping those who need it the most as well. Her love, passion and determination have created a charity that is most deserving of community support!

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much for this wonderful review!

2

Volunteer

Rating: 5

Tricia is a wonderful mother and a warrior in this disorder. Her expertise and commitment to helping others fighting this disorder has forever changed our lives. I would be lost without her and this companies support.

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much Keely!

2

Volunteer

Rating: 5

we are rare has given many hope in a world where there was little information available. Now we are not alone.
Thank you everyone at we are rare

3

Client Served

Rating: 5

Last month I contacted Rare and they were able to provide several doctors in my area that were familiar with this disorder. We have been able to change my daughters life for the better with the information they provided and the services they gave us.
The members are families with children battling this disorder and in my opinion they truly are experts and have helped us so much

Comments ( 1 )

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wearerareTricia 08/08/2014

wonderful review. Thank you Greg

1

General Member of the Public

Rating: 4

Thank you for the help and continued support from We Are Rare, They have changed our lives forever.

1

Client Served

Rating: 5

I cannot say enough about this company. Thank you for all you do
Donna

1

General Member of the Public

Rating: 5

Very helpful company with a friendly staff that never hesitates to help

2

Professional with expertise in this field

Rating: 5

We Are R.A.R.E. Inc is an amazing organization dedicated to helping the children and families within their communities. I can not say enough about Tricia and all she does in the name of not only her Child but all the children that suffer from Schizencephaly, Lissencephaly, and Microcephaly.

As the Founder and President of The Epilepsy Warriors Foundation I look forward to working with them in collaboration to help promote and spread awareness of this brain disorder but also of epilepsy and seizures which is also caused by brain disorders.

I highly recommend them and support their efforts 100%

Comments ( 1 )

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wearerareTricia 08/08/2014

Oh Susan thank you. You are a blessing to know

1

Volunteer

Rating: 5

I worked with this company when my child did a fundraiser last year. They were so helpful in providing literature and information for me to pass out as well as helping us organize the event.
Tricia has become a huge part of my families life and her passion to Schizencephaly is highly inspirational.

1

Professional with expertise in this field

Rating: 5

I have worked with Ms Dennis and assisted her in many speaking events over the last two years.
Her passion and dedication to Schizencephaly and helping families is evident in everything she does.
It is an honor to continue woring with her and her son Noah.