They came! They saw! They chatted over mojitos and exchanged contact information.
The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.
This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss. The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.
The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.
Introducing the PCVI Society!
From http://www.pediatriccvisociety.org –
Image: Three people standing at a podium at Children’s Hospital and Medical Center. Sara Olsen, COO of the PCVI Society, Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president. These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board. Trailblazers they are! Pith helmets for all!
We care about kids with CVI.
The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.
Goals
The mission of the Society will be fulfilled through the pursuit of the following goals:
1. Advance interdisciplinary education and research.
2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.
3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.
4. Improve public and professional awareness of cortical visual impairment in children.
5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.
6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.
On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children. Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.
To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members.
The PCVI Society needs members to help us blaze a trail for our children.
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BECAUSE
Children with CVI need to be identified as early as possible.
They need providers who understand the unique needs of children with CVI.
Families of children with CVI need support and education to help their children see the world.
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So, I will make you the offer I made the folks at this year’s conference.
For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.
Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!
The pith helmet is for trail blazers! Get it? I forgot to say that at the conference. Also, it’s easier to bring pith helmets to a conference than homemade pie. Speaking of pie…
Images: Above: Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.
Below: Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay. Nothing but the best for our trail blazers! This could be you!
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http://www.pediatriccvisociety.org/membership/
CVI Momifesto 
You failed to mention, in your unending modesty, that you, the amazing Rebecca Davis, not some random Mother in a blue jacket, and the originator of the significance of the Pith Helmet in this instance, was elected to the Board of Directors of the PCVIS.
AND, closed out the conference with an incredibly moving, motivating, inspirational and deeply honest presentation citing the importance of advocacy, the fact that CVI does not limit cognition and in fact masks cognition (thank you Ellen Mazel and Peg Palmer for making those statements for the world to hear!) while sharing with the world some of our amazing children with CVI. Sending the conference attendees back out into the world with images of why their work matters and why our kids can’t wait for systems to catch up to their needs around supporting their learning style with the specific, frequent, intentional, purposeful, and precise CVI strategies guided by their CVI Range score.
Thank you to ALL the presentors, professionals and parents (shout out to Cheyanne Sparks for her awesome opening presentation too!) for standing up, speaking out and sharing how to best support, diagnosis, treat and advocate for our children.
Truly,
Lynn
Emma’s Mom
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You blow me away! I hope you know how important your powerful posts are! I was so happy to meet Ms. Momifesto in the flesh this past weekend. This is no “little thing” you are doing to move CVI awareness, advocacy, education… (and more) along. I will always be thankful!
This past weekend was just a small sample of the many talented and powerful people working together, adding their talents to to CVI movement! Onward!
Thank you, Rebecca!
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The “Random Mother in Blue Jacket” is non-other than the amazing Rebecca Davis whose closing presentation was not only filled with suggestions for ways to help, but also with heart. Using photos of many children with a diagnosis of CVI, she reminded everyone attending and watching from remote locations just why this work is so important. It was a great conference filled with useful and inspiring information for both parents and professionals.
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