Subject: Proclamation and/or Illumination Request: World PVNH DisorderAwareness Day, August 7 (insert year)
Hello (insert Mayor, Minister, Governor or Senator name),
I am contacting you today to request a proclamation from (insert towns, city or state) and/or the illumination of (insert building or landmark name) on August 7, 2024, in recognition of the 13th edition of World PVNH Disorder Awareness Day, a cause close to my heart and to families who reside in (insert town or city or state where you live) and around the world.
Attached is a suggested text for the proclamation.
About PVNH
PVNH Support & Awareness is the international neuronal heterotopia
organization that currently supports more than 990 affected families like mine in forty-six (46) countries, including in (insert country). Families affected by PVNH, and other neuronal heterotopia disorders, such as GMH and SBH also participate in World PVNH Disorder Awareness Day by wearing pink and yellow, and we share our own journey to generate even more awareness.
PVNH is Periventricular Nodular Heterotopia, a rare brain malformation that affects babies, children, and adults alike around the world. It can be
associated with a spectrum of clinical manifestations from mild to
debilitating, including seizures in up to 90% of PVNH-affected individuals, motor, cognitive and developmental delays, often involving issues with multiple organs. GMH is Grey Matter Heterotopia, and SBH is Subcortical Band Heterotopia. All are rare malformations of cortical development which may be fatal if symptoms are left unrecognized and untreated. World PVNH Day support all individuals affected by these disorders and other rare neuronal heterotopia disorders. Increased awareness, education and research are needed to improve
diagnosis, find more effective treatments and therapies for side effects and, ultimately, a cure.
(I am myself affected by / My child (or specify who else is affected) is/are affected by) PVNH and I am supporting PVNH Support & Awareness’ efforts to light at least seventy (70) landmarks in 10 countries around the world. (Add a line or two about the impact of PVNH and what this day
means to you and to your family).
Bringing together proclamation and illumination partners is critical to
raising more awareness since PVNH, GMH and SBH not well known among medical professionals, hence improving diagnosis, care, treatments, and research.
Could you join us by proclaiming August 7th as World PVNH Day (insert town, city or state) and lighting up (insert landmark name) in pink and yellow, or in either color if only one is allowed, on August 7? There are two colours, to be used in combination or if only one is allowed, either one: Colour 1: Pink #e44398 (hex #d49); Colour 2: yellow #ffff33 (hex #ff3)
Should August 7th not be available for an illumination, we would be delighted with any dates in August. I have copied Yolaine Dupont,
Founder and CEO on this email in case you have questions for her: yolaine@PVNHsupport.com.
You can find more information on World PVNH Day activities around the
world here: https://pvnhsupport.com/awareness-events/world-pvnh-disorder-awareness
If you agree to help us, Yolaine will add the information to the website, approach local media, as well as share the news using one or more of these hashtags #Paintitpinkandyellow #WorldPVNHday #PVNHloud and #PVNHawareness on PVNH Support & Awareness / PVNH Support social media (@PVNHsupport @WordPVNHday) and Yolaine’s (@vangroovymom), which families usually also share.
Thank you for considering our request,
(insert your name, address, and phone number)
