Featured BLOG: Moms on Monday with cvimomifesto

-
I have been branching out in my advocacy efforts and what I have learned is MOMS, yes MOMS, we are the ones whom wake up with premature wrinkles because we unfortunately not only live it, but we dream about IEP's. And this is why I wake with spry grey hairs. 

I took some time to share our story, focusing on the impact of the diagnosis of Cortical Visual Impairment.

Check it out if you haven't already!

https://cvimomifesto.com/2018/01/22/moms-on-monday-11-cheyanne-from-nv/


Popular posts from this blog

"Rare"

-
Image
February 28th, 2023 is Rare Disease Day. Chances are it's rare that you know the date or significance of this day. Why, because it's rare that you or your loved ones are affected by a rare disease. A small percentage of us out here in the world know about the rare day. However the rare population that DO know about the day are fully aware. They may not all order their steaks rare, but they do have a rarity among them! While it's RARE that I share today, given I haven't in nearly 5 years. Even more rare is the day I choose to bring my voice back happens to be National Rare Disease Day, coincidence I think not!   Where in the world has Archer journeyed too? Well I should say, he has became quite a jay bird, rightfully so as any nine year old does and will, a strong will at that. He is finding out what a personality one can have! Jay birds are bold and known for their raucous manner. Archer has learned his voice gets him what he wants, any sounds, louder the better. More o
Read more

Visually Impaired children NEED access to Literacy.

-
Image
As many of you know the little prince has Cortical Visual Impairment (CVI). We consider this to be his greatest challenge in life.  Thankfully we when we set out on our journey, we found organizations making statements about the necessity of CVI. American Printing House for the Blind (APH) upholds the following statement, produced in 2008 on CVI. "Children who have Cortical Visual Impairment (CVI) require educational supports that are equal to those who are considered to be blind or visually impaired." When assessing how to propel him forward in life we quickly understood it comes down to LITERACY. He is happy to simply move around his world by feeling, smelling, and listening, BUT THEN the frustrations set in. He has vision, and he needs assistance to guide him into accessing his visual world. This BEGINS with building his literacy skills. We use approaches researched and developed by Dr. Christine Roman-Lantzy. We have changed the way we interact and have learned
Read more

HOPE. It's is in our GENES

-
Image
As year 3 of parenthood rolls right on by, my voice begins to elevate further into the world. One single voice , enrolled, to decipher her son’s expressions. Translating the communication of his experiences with writings, my own skewed scope.   Why share? Why give Voice? To spread the vision of rare disease. Rare individuals DO positively impact our world.   We were welcomed to parenthood with a RARE experience, but not as rare as some families’ lives. The families we now relate with, some never even having met in person, but we share these rare experiences, that are even rarer from each and every rare child. According to globalgenes.org 350 million people worldwide suffer from rare diseases. Approximately 50% of the people affected by rare diseases are children. Imagine this… if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. But, WHY do we not hear about these rare diseases? It is hard for one single v
Read more