Jimmy Pollard closes HDYO's 2025 International Young Adult Congress with a speech on Empowerment Through Gratitude.

You can watch the full video here.

Lance joins me for our HD Uncut series to share his story and how being proactive about his mental health has made such a difference.

The "Power Panel" at the World Orphan Drug Congress USA in Boston, MA, spoke about addressing common barriers in rare hereditary, progressive adult-onset diseases. You can watch the video here.

Corrie Harris shares her family's HD journey with us, and it is both raw and beautiful. She shows how, for her family, there are no coincidences and love never fails.

These are the top 3 apps that I personally use.

You can access the Goblin Tools browser version here.

You can find more information on Visible here.

You can find more information about Bearable here.

March is Women's History Month, and our HD community has so many women who are truly badasses - from leadership in our Patient Advocacy Organizations to the JHD moms and caregivers to the people with HD who fight every single day. I wanted to take a moment to acknowledge that. :)

Erika Boulavsky of HD Reach and I not only take some time to honor the badass women of the HD community. We also talk about our recent experience at the HDYO Congress in Prague, and we talk about HD Reach's upcoming event in NC. You can learn more and register here: https://www.hdreach.org/conference/2025.html

You can find the Fundación Familia Huntington Costa Rica on Facebook and Instagram

I'm attending and speaking at the HDYO Congress Event in Prague! Take a listen!

If you would like to learn more about how to get involved, please email me at [email protected]

Rare Disease Day is Feb 28, 2025. 

Please visit NORD's website for information and resources for their #ShowYourStripes campaign. They have a social media toolkit, as well as playbooks with step-by-step guides on how to raise awareness for Rare Disease Day.

Another great organization with resources is Global Genes. You can participate in their #ZebraTales and #CareAboutRare campaigns.