2022 May Awareness – Light Up Challenge

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What is the Light Up Challenge?

Help shine a light on EDS and HSD this May!

Contact your local buildings of interest and submit a request to have the building lit up for awareness. The more national and local buildings and monuments lit up, the further the global impact for awareness. Request black and white lights for zebra-strong awareness, or go red for vascular EDS awareness.

The Light Up Challenge is a great way to raise awareness from wherever you are in the world, and your request counts as 5 Acts of Awareness towards the 150,000 global total this May!

How do I take part?

Check the status of your local or national building or monument below – if it isn’t listed, contact them to LIGHT IT UP!

There are many different venues that can be lit up for awareness, from malls and shopping centers to statues and monuments, and from town halls to schools. There is often limited availability and so reach and contact your chosen venue as early as possible to try and secure a date.

Each venue will have its own process for requesting it to be lit up, so try and reach out by telephone, email, or social media to speak with a manager or to find out the process. Scroll down for our handy email templates!

Many venues will have online applications you can submit.

What date should I request for them to Light it Up?

We encourage you to request:

  • May 4, 2022, as a day to Light it Up in black and white
  • May 20, 2022, in red for #REDS4VEDS Day for awareness of vascular Ehlers-Danlos syndrome (vEDS)
  • Alternatively, any day throughout May in black and white will help with awareness!

Let us know!

Complete this form to tell us your Light it Up request has been submitted and to add your challenge to the Acts of Awareness goal.

On the night

Be sure to take photographs if you are attending the building or monument light up on the confirmed night! Share these on social media with the hashtags #MyEDSChallenge, #MyHSDChallenge, and on May 20th, #REDS4VEDS.

Denver City Hall Colorado
Mayo Clinic Rochester, NY
Mayo Clinic Jacksonville, Florida
Mayo Clinic Phoenix, AZ
Fairmont Austin Austin, TX
Capitol Building Arizona, AZ
Empire State Building New York, NY
Skydance Bridge Oklahoma, OK
Gilbert Water Tower Arizona, AZ
Premier Bank Tower Ohio, OH
Spinnaker Tower Portsmouth, UK
Mandurah Bridge Australia
Bolte Bridge Australia
Calgary Tower Alberta, Canada
Toronto City Hall Toronto, Canada
Parliament House South Australia
The King and Queen Building Georgia, GA
Southampton Guildhall Southampton, UK

 

Canada

CN Tower

 

United Kingdom

London JA Taylor building
Canada Life
RBC London Place
Sifton Properties
Bridewell Centre
Magheralfet
Ranflury House
Burnavon Cookstown
London Onterio’s City Hall
Brock University
Lar Ulaaloh
Spinnaker Tower

Australia

Parliament House

 
United States

City Hall Dome
Rock n Roll Hall of Fame
Intermodel Parking Large Deck
Alberta Park Fountain
Tuscaloosa City Hall
Welsaco Tower
Burns Bridge
Fore River Bridge
Longfellow Bridge
Zakim Bridge
Terminal Tower
Houston 6 Bridges
Skydance Bridge

 

How do I submit my Acts of Awareness? 

The Light it Up Challenge = 5 Acts of Awareness.  Submitting your Acts of Awareness simple! 

  1. Submit your Light it Up request this form, attaching a screenshot of your challenge evidence. This will help us to move our awareness thermometer closer to the goal of 150,000 acts of awareness throughout May! 
  1. Share your efforts on social media. Social media is a great way to reach people and raise awareness. Be sure to tag @ehlers.danlos in your posts and we will repost and share as many as we can! Use the hashtags #MyEDSChallenge and #MyHSDChallenge

Be sure to have submitted all of your acts of awareness by June 7, 2022, in order to claim your May awareness incentives. 

LIGHTING REQUEST EMAIL TEMPLATE – EDS AND HSD

SUBJECT

Shine a light on EDS and HSD


EMAIL BODY

Dear [ENTER NAME],

My name is [ENTER NAME]. I live in [ENTER CITY, STATE, COUNTRY].

GIVE 1-2 SENTENCES ABOUT YOUR DIAGNOSIS/CURRENT SITUATION/CHALLENGES OR YOUR FAMILY MEMBER’S.

May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month, a month dedicated to raising awareness for people living all around the world with these complex, multisystemic conditions.

Can [ENTER BUILDING / LANDMARK NAME] be lit up for EDS and HSD Awareness Month on May 4, 2022? The colors are black and white to represent the zebra, our symbol for awareness.

I look forward to hearing from you.

Kind regards,
[ENTER NAME] 

LIGHTING REQUEST EMAIL TEMPLATE – vEDS

SUBJECT

Shine a light on vEDS


EMAIL BODY

Dear [ENTER NAME],

My name is [ENTER NAME]. I live in [ENTER CITY, STATE, COUNTRY].

GIVE 1-2 SENTENCES ABOUT YOUR DIAGNOSIS/CURRENT SITUATION/CHALLENGES OR YOUR FAMILY MEMBER’S.

May is Ehlers-Danlos Syndromes Awareness Month, a month dedicated to raising awareness for people living all around the world with these complex, multisystemic conditions.

May 20 is #REDS4VEDS Day, a global day of awareness, wearing red for the vascular type of Ehlers-Danlos syndrome (vEDS): a rare, life-limiting genetic disorder.

Can [ENTER BUILDING / LANDMARK NAME] be lit up for #REDS4VEDS Day on May 20, 2022? The color is red.

I look forward to hearing from you.

Kind regards,
[ENTER NAME]