FOR IMMEDIATE RELEASE
World PVNH Day 2024: 45+ Landmarks in 5 Countries Raising Awareness for Rare Neurological Disorders
Vancouver, BC, August 7, 2024 — On August 7, landmarks and communities around the world will come together to mark the 13th edition of World PVNH Day, dedicated to raising awareness and supporting those impacted by Periventricular Nodular Heterotopia (PVNH), Grey Matter Heterotopia (GMH), and Subcortical Band Heterotopia (SBH). This annual event aims to shed light on these rare neurological disorders, promote understanding, and drive research efforts for better diagnosis and treatment. Over 45 illuminations are also occurring in 5 countries in support of impacted individuals and their families.
About PVNH, GMH, and SBH
Periventricular Nodular Heterotopia (PVNH) is a rare brain malformation occurring during brain development, leading to a range of neurological issues including epilepsy, learning difficulties, motor impairments, and multiorgan complications which can range from mild to fatal if left untreated. Grey Matter Heterotopia (GMH) and Subcortical Band Heterotopia (SBH) are related disorders, with grey matter disruptions in brain development causing varying degrees of neurological symptoms. Despite its profound impact on individuals and families, PVNH remains often unknown to most medical professionals.
Why World PVNH Day Matters
Awareness is crucial for the rare disease community. With increased visibility, we can foster understanding, reduce stigma related to seizures which are common in affected individuals, and enhance support for affected individuals and their families. World PVNH Day also plays a vital role in education and in encouraging research, which are essential for developing effective treatments and ultimately finding a cure.
How to Participate
- Wear Pink and Yellow: Show your support by wearing pink and yellow, the official colors of World PVNH Day. Share your photos on social media with the hashtag #WorldPVNHDay #PVNHloud #PVNH #GMH #SBH
- Share Patient Stories: Highlight the stories of those living with PVNH, GMH, and SBH to raise awareness and inspire others.
- Illuminations and Proclamations: Join the global initiative by taking photos of landmarks, offices, homes in pink and/or yellow recognizing World PVNH Day.
- Spread the Word: Use social media to share information about PVNH, GMH, and SBH. Every post helps to educate others and increase awareness.
Patient Story
“PNVH Day matters to me because I would like to be able to support my son in the best way possible and help him to live in a more inclusive and supportive society. I also want him to have access to a knowledgeable medical team and suitable medical care.”
Support and Research
Research is the cornerstone of hope for the PVNH community. Your support can drive advancements in understanding these disorders, leading to better treatments and, one day, a cure. Learn how you can contribute to ongoing research efforts by visiting https:PVNHSupport.com
Join Us
Together, we can make the 13th edition of World PVNH Day the most impactful one yet. By raising awareness, supporting research, and sharing the stories of those impacted, we can make a difference in the lives of millions around the world.
PVNH Support & Awareness invites all to participate in World PVNH Day, bringing attention to the needs of the PVNH community. Our mission is to educate the public, advocate for better research and treatment options, and provide resources and support to those living with PVNH, GMH, ABH and other forms of neuronal heterotopia disorders.
Quote
“World PVNH Day is a necessary global movement to shine a light on this rare condition and the incredible strength of those living with it,” said Yolaine Dupont, Founder, CEO, Patient Navigator & Advocate. “By coming together as a community, we can drive awareness, enable research, enhance support, and ultimately positively impact the life for individuals with PVNH, GMH and SBH and their families.”
Call to Action:
We invite everyone to join us in this important cause. Whether you are directly affected by PVNH or simply wish to show your support, your involvement can make a difference. Visit https://pvnhsupport.com/2024-world-pvnh-day for more information on how you can participate in World PVNH Day 2024.
Together, we can create a world where those with PVNH receive the understanding, care, and resources they deserve.
About :PVNH Support & Awareness
PVNH SUpport & Awareness – the international neuronal heterotopia disorders community- is dedicated to supporting individuals and families affected by Periventricular Nodular Heterotopia (PVNH) and other forms of neuronal heterotopia disorders. Through advocacy, education, and research, we strive to improve the lives of those living with PVNH and promote a greater understanding and recognition of this rare neurological disorder.
For more information, please contact
Yolaine Dupont
Founder, CEO, Patient Navigator & Advocate
604-6161-5171
yolaine@pvnhsupport.com
https:PVNHsupport.com
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