Subject: Proclamation and Illumination Request: World PVNH Disorder
Awareness Day, August 7, 2024
Hello (insert Mayor name / Governor or Senator name),
I am contacting you today to request a proclamation from (insert towns, city
or state) and the illumination of (insert building name) on August 7, 2024, in
recognition of the 11th 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).
Attached is a suggested text for the proclamation.
About PVNH
PVNH Support & Awareness is the international neuronal heterotopia
organization that currently supports more than 950 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 /ren is/are affected by) PVNH and I am
supporting PVNH Support & Awareness’ efforts to light at least sixty (60) landmarks
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? Should August 7th
not be available for an illumination, we would be delighted with any dates
between August 1st-15th. 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,
and then 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 which families
usually also share.
Thank you for considering our request,
(insert your name, address, and phone number)
