May Awareness Month 2025 – Shining a light on HD: One Action a Day

Every May, communities around the world come together to shine a light on Huntington’s Disease (HD). From families and caregivers to clinicians, researchers, and advocates, we are united by one goal: raising awareness and celebrating the strength, resilience, and humanity of the HD community.

This year, we’re launching a special May Awareness Month Calendar — 31 days of small actions, reflections, and learning opportunities that anyone can take part in. Whether you’re part of the HD community or simply want to learn more and show support, this is your invitation to get involved.

Each day in May brings a new way to connect, educate, advocate, or care. Some activities are quiet and reflective, others are creative or interactive — but all of them are designed to spark conversations, inspire compassion, and bring visibility to Huntington’s Disease.

🗓️ Join us on this journey —- one day, one step, one story at a time.

You can follow the calendar daily, pick your favorite ideas to share on social media, or come back throughout the month when you need a dose of hope, inspiration, or community.

💜 Use the hashtags: #ShiningALightOnHD #MoreThanHD #HDAwarenessMonth

📅 May Awareness Month Calendar

May 1 – Wear purple day:
Post a picture wearing purple to support HD visibility.

May 2 – Conference sneak peek:
Explore the upcoming EHA Conference program and watch a highlight from a previous event. You can learn more here and see a video from a previous event here.

May 3 – Movie watching:
Watch a short film like The Present, Alive & Well, Dancing at the Vatican, & more

May 4 – Paws for HD:
Post a photo of your pet in purple or holding a supportive sign.

May 5 – Website exploring:
Visit the websites of Moving Forward, European Huntington Association, International Huntington Association, Huntington’s Disease Youth Organization, HD-Community Advisory Board or HD Trial Finder and discover something new.

May 6 – Write on the Gratitude Wall:
Add a note to our virtual Gratitude Wall sharing what you’re grateful for in your HD journey—whether it’s a person, a moment, or a breakthrough in research! Find it here 

May 7 – Join a webinar
EHA is hosting a Webinar called “Voices of Resilience: Life with HD, Not Defined by It” at 5 pm CET. You can register here.

May 8 – Find your association
Check your local association or community to see how they are marking May Awareness Month.

May 9 – Write a letter to your future self
Take a moment to reflect: What are you thinking and feeling right now? What message would you like to send to your future self? Share your hopes, dreams, or even a gentle reminder. Write a letter to yourself and choose when to read it again—next year, in five years, or even ten. Let this be a keepsake of your journey.

May 10 – Talk to a friend about HD:
Have a conversation about HD with someone who may not know much about it.

May 11 – Watch a video:
Watch a video about HD or learn which TV series have featured Huntington’s.

Suggestions of videos: www.huntington-disease.org/videos-2/

May 12 – Patient journey insight:
Learn more about ERN-RND’s Patient Journey.

May 13 – Read an HD book
Read (or buy if you do not have it yet) a book from someone in the HD Community 

Suggestions here.

May 14 – Create something:
Draw, write, or build something that reflects how you feel about HD. If you want, share a picture of your creation using #ShiningALightOnHD

May 15 – INTERNATIONAL HD DAY
Today is International Huntington’s Disease Day! Remember our Rare Disease Day campaign “More than Huntington’s Disease?” (if not, you can refresh your memory here). The idea was to show that people in the HD community are more than just the disease: they have hobbies, passions, jobs. Share a picture or a video where you show your favourite hobby, your profession, something that you love, anything. Here is Rob’s example.

Share your sentence: “I am from the HD community, but I am also a ________.”

May 16 – Musical healing:
Listen to a song like North Star and reflect on what moves you.

May 17 – Inspiration post:
Share a photo of someone in the HD community who inspires you.

May 18 – Did you know?
Learn a new fact about Huntington’s Disease.

May 19 – Walk for HD:
Take a walk in honor of the community. You can join the Strava group here and share your route and a picture! Bonus points if you are wearing purple 😃

May 20 – Personal story time:
Read a personal account from a blog, book, or HD storyteller.

Some suggestions:

www.huntington-disease.org/hd-column/
www.huntington-disease.org/hd-blog/
www.huntingtonsdiseasenews.com/category/columns/hd-in-color-a-column-by-tanita-allen/
HDYou Community Stories

May 21 – Say thank you:
Reach out to thank a caregiver, advocate, or organization you admire.

May 22 – Self-care learning:
Read “Be Empowered by Tanita”’s column about self-care on the IHA website and practice one of her tips

May 23 – Fundraising or awareness:
Donate, fundraise, or simply share how others can contribute.

May 24 – Mindfulness moment:
Try a mindfulness exercise. Pause, breathe, and reset.

May 25 – Celebrate the journey:
Post (or reflect only) a highlight or success from your HD advocacy or care journey.

May 26 – Lifestyle tips day:
Check out Moving Forward’s lifestyle advice here and share your favorite insight.

May 27 – Shining a light on HD:
Light up a candle, put up some string lights, change your leds to purple. You can share a picture of your “HD lights” using #ShiningALightOnHD

May 28 – Podcast listening:
Listen to a podcast episode about HD or related topics. 

Suggestions:
www.help4hd.org/help-4-hd-live
www.hda.org.uk/news/medics-for-rare-disease-huntingtonsinmind-podcast/
www.hdsa.org/podcast/

You can also join EHA’s webinar about their new project, Huntington Academy. The link will be available soon.

May 29 – HD creativity spotlight:
Share a piece of creative work by someone in the HD community.

Suggestions:
www.instagram.com/zoe_green_art
www.instagram.com/kindmindsforhd
www.facebook.com/HuntingtonsDiseasePoetry/
www.factor-h.org/art4hd-program#
www.hdsa.org/product/kathy-gibson-prints/

May 30 – Your favorite post of the month:
Re-share the post that moved you the most this May.

May 31 – Together we shine:
Wrap up the month by posting/ reflecting your thoughts on what you’ve learned, felt, or done. Thank you for being part of this!

🟣 Why May?

May was chosen as the month to shine a spotlight on Huntington’s disease for a meaningful reason. The origins trace back to May 18, 1992, when then U.S. President George H. W. Bush officially proclaimed May as National Huntington’s Disease Awareness Month. This milestone came just one year before the discovery of the HD gene, a groundbreaking achievement led by Dr. Nancy Wexler and her team in Venezuela. Since that historic moment, May has become a global time of reflection, action, and unity. Over the past three decades, incredible strides have been made – from deepening scientific understanding to amplifying the voices of those affected. May is now recognized around the world as a time to come together, raise awareness, and push forward with hope and determination.