The Alyssa Greer CVI Foundation

Founder: Brittany Greer, (662) 310-0146, cviconnection@gmail.com

Mission Statement:

The purpose of The Alyssa Greer CVI Foundation is to bring awareness to CVI and enable change through advocacy, outreach and education. The goal of the non-profit organization is to help families get access to resources, counseling, tools and testing they need to ensure their child with CVI has a successful future.

Foundation Goals:

Advocacy:

Implement a CVI training program in the state to be modeled after the CVI MultiState Mentorship Project (a grant program funded through the State Department of Education/Deaf-Blind Project in four northern states). This training will better educate teachers, therapist, government workers, care givers, doctors, and service coordinators on CVI and how to provide the best resources for children.

Implement assessment for children with CVI to better evaluate and determine their specific needs and intervention strategies. (Dr. Roman-Lantzy’s CVI Range)

Provide a vision resource coordinator for families (similar to a hearing resource coordinator), and provide at-home service for visually impaired children and those with CVI that do not qualify for assistance through the Mississippi School for the Blind.

Awareness:

Bring awareness through the creation of a website for CVI resources (cviconnection.com), website for the foundation (thealyssagreercvifoundation.org), blog (cvimom.com), social media (Facebook, twitter pages), and print material (flyers, brochures to be distributed to families, government agencies, daycare facilities, therapists, doctor’s offices, hospitals, schools, colleges, etc.).

Bring awareness to CVI through local and state newspapers, magazines and TV stations. Promote support group meetings and CVI classes/workshops. Have paper and TV stations do human interest stories on families and children with CVI as well as a human interest story about The Alyssa Greer CVI Foundation.

Feature families of children with CVI on the various CVI websites, blogs and social media pages as a way to bring “faces” and a personal approach to learning about CVI.

Education:

Visions of Hope: Introduction to CVI – This is a class offered to teachers, therapists, doctors, nurses, children service workers, early intervention coordinators, and parents that will provide them with basic information on CVI, characteristics, causes, diagnosis and intervention strategies. The class will be held at the Emerson Family Center in Starkville. The center will print flyers, distribute the flyers and provide advertisement for the class.

CVI Presentations at local clubs/organizations (Lions Club, Junior Auxiliary, Pilot Club), school district in-service, MSU education major students, state conferences, etc.

Provide parents with the funds needed to attend state and national conferences on CVI. Pay for travel and registration expenses.

Provide funds to host a state CVI Conference with top specialists in the nation (Dr. Roman-Lantzy, Ellen Mazel, Janet Salek) as guest speakers. Offer scholarships for parents to attend.

Outreach:

Create local support groups for families of children with CVI. Start an online support group to connect families with others in the state and across the country.

Provide counseling/transitioning for families with a new CVI diagnosis. Provide assistance on how to get started, helpful resources, local support groups, websites, print material, agencies, etc. Serve as a family liaison. I would like to have families of children with CVI who have gone through the process and have first-hand experience and knowledge be the ones to help these new families in order to make the transition easier.

Start a scholarship for students wanting to become Teachers for the Visually Impaired (TVI). A requirement is to have them attend CVI conferences and get training on CVI.

Start a center for CVI and neurological impairments as a central location in the state for parents and children to attend for assessments, resources, light boxes, material, workshops, training, counseling, etc.

Projects:

Light the Way – A project to ensure every child with CVI has a light box. Partner with families to apply for light boxes through APH (doing paperwork to see if they qualify). If a family does not qualify for a light box provide the funds to get the child a light box and supplies.

CVI iPad Project – Help parents in financial need get iPad’s for their children with CVI so they will have access to the numerous free apps available. Provide a long list of apps to parents that have tablets.

DIY CVI Mom – Provide funds to help families purchase the materials needed to modify their homes and build sensory “little rooms.” Offer workshops for parents to share tips and ideas, as well as material, to do DIY projects at home. Provide funds to teachers with visually impaired/CVI children to modify their classrooms and have the resources they need in their classroom.

CVI Toy Box – Provide funds to help families get appropriate toys for birthdays, Christmas and anytime in between. Sponsor a family for Christmas, Christmas in July for new toys throughout the year. People can donate money or purchase toys from a “toy approved” list.

The organization is currently raising money to apply for its 501c3 status to become a non-profit organization. We are looking for clubs/organizations, agencies, businesses, and groups to help sponsor a fundraiser for the various CVI Projects. The organization is in need of individuals to put on the advisory board, as well as volunteers, sponsor and donors to help the organization reach its goal of becoming a non-profit organization.

What The Alyssa Greer CVI Foundaiton is currently working on:

CVI website – http://www.cviconnection.com (under construction)

The Alyssa Greer CVI Foundation website – http://www.thealyssagreercvifoundation.org (under construction)

CVI blog – http://www.cvimom.wordpress.com

Social Media – Facebook and twitter account (cviconnection)

Forming a support group held at Emerson School in Starkville (starting a group for parents of children with special needs and hoping to branch into a CVI Group). The Emerson Family Center will be providing the meeting space, child care for families and refreshments, printing and distributing flyers and providing advertisement in the local newspaper and on local TV and radio station.

Visions of Hope: Introduction to CVI – Informative class about CVI basics: what is CVI, characteristics, signs, diagnosis, intervention. The Emerson Family Center will be providing the meeting space, child care for families and refreshments, printing and distributing flyers and providing advertisement in local newspaper, tv and radio.

In the process of scheduling CVI presentations at local clubs/organizations including but not limited to: Lions Club, Care Ministries, Helping Hands, NFB, St. Lukes, Junior Auxiliary, Pilot Club, and MSU Low Vision Center. I plan to speak at these places to bring awareness to CVI and to acquire partners, donors, volunteers, and board members for The Alyssa Greer CVI Foundation.

About Brittany Greer, the founder of The Alyssa Greer CVI Foundation:

The Alyssa Greer CVI Foundation is named after my daughter Alyssa “Aly” Greer. The Foundation was formed out of necessity to ensure children with CVI, children like my Aly, would have a voice and a chance to succeed no matter their impairments. I took on the role as my daughter’s advocate when she was two months old and I have made sure she was provided every possible service available. But through getting her into Early Intervention and setting up her therapy, it became shockingly apparent how little was offered for her vision. Because her visual impairment is neurological and she has other disabilities, she was not accepted into the Mississippi School for the Blind, which is the only state resource available for the blind and visually impaired. As a mother, I started to think about everything I needed to help my daughter along her journey and that is essentially how the Foundation was formed. I want to serve as an advocate for ALL children with CVI. I understand that not every family can go the extra mile for their children, whether it is for financial reasons or time restraints. I however, have been fortunate enough to be able to become a stay at home mom and focus primarily on my children’s needs. I have a background in public relations and graphic design so I have put my talents to use to make a difference in the lives of children and their families.

About Aly:

When Aly was born she had severe nystagmus (uncontrollable eye movement). We were told by her pediatric ophthalmologist that she was totally blind with no light perception. He said her vision loss was neurological. She was diagnosed with Cortical Visual Impairment (CVI) when she was five months old through an MRI. Aly was also diagnosed with Microcephaly and we were told she had brain malformations and was missing white matter and portions of her frontal, occipital and temporal lobes. She also has a thinned Corpus Collosum (the part of the brain that connects the right and left hemisphere). Aly started therapy at seven months old and has continued to make progress. It became evident that Aly had hearing loss around the time she turned one. She now wears hearing aids and receives at-home hearing therapy through Magnolia School in Jackson. We are working on getting her into the Deaf-Blind Project in Hattiesburg to serve as an additional therapy for her dual sensory impairment. My family recently made the decision to move to Starkville because of the resources that were available for Aly. She is currently attending a preschool program for children with disabilities at T.K. Martin Center for Technology and Disability and a pediatric therapy center which provides her with additional feeding therapy. Her occupational therapist at Kids Therapy Spot specializes in children with visual impairments and CVI. We are very fortunate to have a therapist who knows about CVI and light box therapy, but not every family is that lucky. I hope in the upcoming years all therapist will be trained and equipped to work with children who have CVI. Providing light box therapy and the appropriate intervention strategies based on the child’s CVI range, will greatly improve their chances of increasing their vision to become more functional in the school system and beyond.

The Alyssa Greer CVI Foundation Vision:

What makes The Alyssa Greer CVI Foundation stand apart from other organizations is that it is the first of its kind. As a parent of a child with CVI I know first-hand what parents are going through when their child gets that diagnosis. The doctor tells you very little and sends you on your way. There are very few Internet resources available and the information is scattered. One of the first things I learned about CVI was that it is the number one cause of visual impairment in children today. Because more children are being born prematurely and surviving, the numbers continue to rise. CVI can be a hard condition to diagnose because it can appear as something other than what it is and also because the eyes appear totally healthy. The majority of children with CVI also have additional disabilities that could become a parent or doctor’s primary focus. My question was why there wasn’t more available for these parents and children. Everything I learned about CVI was through my own research. I was teaching her therapists how to work with her and introduced them to light box therapy. They had very little knowledge on the condition and had only worked with one other child who had CVI.

It is my hope to have The Alyssa Greer CVI Foundation change the way these children are serviced through Early Intervention and the school system by offering state-level training and workshops for therapists, teachers, doctors, government agency workers, Early Intervention coordinators and parents. The Foundation will help bring awareness to CVI so that children can be diagnosed early and get the intervention needed so that they have a chance for a brighter future.

It is my vision to have The Alyssa Greer CVI Foundation be the first call a parent makes when their child is diagnosed with CVI. The Foundation will serve as the family’s number one resource for partnering them with the appropriate specialists, Early Intervention, and get them assessed through the CVI Range by certified Teachers for the Visually Impaired (TVI). The Foundation’s projects will ensure that every family has a light box in their home and the materials and toys needed to carry over their vision therapy at home.