May Awareness Month Wrap Up

May 31, 2022

May Awareness Month 2022 came to an end. Between the webinars, weekends away and Light It Up For HD, there were a lot of initiatives coming from all the different associations.

The International Huntington Association and the European Huntington Association joined forces and prepared not only some social media posts for associations to use, but also planned two webinars: All You Need to Know About Proof HD by Prelenia and Explore for Huntington: The Adventure of Dimitri Poffé in Latin America.

Light it Up 4 HD 2022

Light it Up 4 HD is campaign that takes place every May. It consists in lighting up buildings in several cities with blue and purple, the colors of HD.

Here’s some of the buildings that took part in #LightiItUp4HD

Asociacion Para el Apoyo a Los Enfermos de Huntington (Argentina)

APAEH had a virtual encounter on the 13th of May, to discuss “The path that we have to go through as caregivers”

Huntington's NSW ACT (Australia)

To raise awareness this May, Huntington’s NSW ACT organised some High Tea 4 HD

Huntingtons Queensland (Australia)

In Queensland, there was a fundraising event called Running for Nan’s HD, with a lot of participants!

Huntingtons SA & NT (Australia)

Still in Australia, Huntingtons SA & NT planned a great month with Tutu Walk, Run, Wheel, Dance – a beautiful walk, run, wheel or dance along the River Torrens wearing a blue tutu, finishing up at Bonython Park with a sausage sizzle, on the 22nd of May.

Huntington's Victoria (Australia)

Huntington’s Victoria hosted a ball gala ball to all Huntington community, on the 6th of May.

They also had a campaign called “Go Blue” on the 22nd of May, to raise awareness for the disease.

Huntington Liga (Belgium)

From 13 to 15 of May, Huntington Liga organised some activities a weekend holiday for patients, with or without a partner. They had 44 participants.

Huntington Society of Canada

Together with HDSA (Huntington’s Disease Society of America), the Huntington Society of Canada created an HD Hockey Classic to raise funds for the community. The inaugural event was on May 14.

The association also hosted a National Virtual Walk called “Huntington Heroes”, also to raise funds to help HD families.

Société Huntington du Quebec (Canada)

The Canadian association in Canada didn’t stay out of May Awareness Month celebrations and had a wonderful charity dinner.

Fundación Familia Huntington Costa Rica

In Costa Rica, the author Marielos Zamora Mena presented her book, “Suceso Inesperado”, which means “Unexpected Success”, online, on the 28 of May, through Zoom.

Huntington's Disease Association of Cyprus

In Cyprus, apart from the #LightItUp4HD movement, the Huntington’s Disease Association of Cyprus also created an event to inform about this disease, with activities for children and adults.

Huntington's Disease Association (United Kingdom)

To start May Awareness Month, Huntington’s Disease Association launched #HuntingtonsInMind, which consists in short films that highlight the impacts of HD in mental health and wellbeing. They can be found here.

On 20 of May, they also hosted HDA awards.

HDA also created #HDHike challenge, to raise funds for the association and the disease.

Dr Sarah Gunn, a clinic psychologist, participated in a Webinar related to HD and mental health:

Suomen Huntington Yhdistis Ry (Finland)

The Finish association organised a webinar about HD on the 24 of May. Also, the annual meeting of Suomen Huntington-yhdistyksen took place on the 25 of May, in Lappland Hotels Oulussa.

Huntington's Disease Association of Ireland

Family Voices is a webinar series hosted by four associations from the UK and Ireland. On 16th of May, the title was “Melanie Pearson: Somebody Up There Likes Me”

Lega Italiana Ricerca Huntington (Italy)

LIRH participated in the podcast “Paziente Protagonisti” to talk about Huntington’s Disease. The association also promoted a meeting with all Huntington families.

Huntington México

Mexico also participated in #LightItUp4HD with several nuildings. Besides that, they had a webinar on May 12 with the president of the Costa Rica Huntington Association, Juan Carlos Angulo, a webinar on May 19 with the treasurer of APAEH, María Elena Galache de Toro, and a webinar on May 26 with Factor H President, Ignacio Muñoz.

Landsforening for Huntingtons sykdom (Norway)

Besides taking part in #LightItUp4HD, Norway also had a fun event with community members, with lots of good food and drinks.

Fundación Huntington Puerto Rico

While sharing precious content during this month, Fundación Huntington Puerto Rico also had a “Coffee for Huntington” meeting

Scottish Huntington's Association

The Scottish Association created a funding opportunity, allowing donators to double their generosity. This continues until the 14th of June. They also took part in the “Family Voices webinar”

Asociación Canaraia de Huntington (Spain)

In Spain, many were the buildings lighting up for #LightItUp4HD, as seen below. Asociación Canaraia de Huntington and Asociación Corea de Huntington took a big part promoting this.

Asociación Corea de Huntington (Spain)

ACHE promoted, on the 7th of May, an event called “La Incertidumbre de la Espera”, which means “The uncertainty of waiting”, a national encounter for pre symptomatic people and people at risk of having the disease.

They also created an informative event about HD, including an annual assembly for members.

Asociación Valenciana Enfermedad de Huntington (Spain)

To show solidarity to HD, AVAEH planted some trees in a beautiful event.

Schweizerische Huntington Vereinigung (Sweden)

Sweden organised the family day on the 18th of May.

Huntington's Disease Society of America

And to finally wrap up May Awareness Month we have HDSA, that was really active on social media. They had the HD Hockey Classic already mentioned previously, with Huntington Society of Canada, created a campaign called “31 days, 31 stories”.

HDSA also had “Team Hope Walk” all over the country, in different states in order to raise funds for the community

There were a lot of great initiatives for May Awareness Month 2022 and we hope to have much more next year!