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
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
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
It's an honor and a privilege to be a part of such an amazing group.
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
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!
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.
I am so grateful to be a part of this company and helping families.
Amazing support when our family did not have answers and needed support
We Love you guys
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!
Thank you so much!
Thank you so much for being the motivation for so many families
We love our families and will continue to do whatever we can to help this dosroder
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!
Oh Lisa. Thank you. We love your amazing family. Big huge hugs
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
Oh Jody, Thank you so much for this incredible review!
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.
Thank you so much for the amazing review Andrea. We love u
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!
Thank you so much for this wonderful review!
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.
Thank you so much Keely!
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
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
wonderful review. Thank you Greg
Thank you for the help and continued support from We Are Rare, They have changed our lives forever.
I cannot say enough about this company. Thank you for all you do
Very helpful company with a friendly staff that never hesitates to help