Help 4 HD Live!

Help 4 HD Updates for 2025 with Katie Jackson

Emma Wajswasser is a 12-year-old student from Toronto whose grandpa is living with HD. She wrote this book because she wanted to educate kids and adults about the disease and how to interact with people in a kind and compassionate way. This is not just a book about Huntington’s disease; it is about having empathy and understanding for any older adults in our lives. The book is published by Lemonad...

Pay What You Can: www.paywhatyoucanpeersupport.com/faqs  Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline:   If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org   They also have a chat option and services for deaf/HoH  For other countries, visit thi...

Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com...

HD Uncut: Days of Our Lives

The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com.   www.hungerfreeamerica.org Full Cart, which is a national f...

Update about Sage Therapeutics with Lauren Holder

If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw

Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies...

Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foun...

Our Lived Experience (Panel from Help 4 HD Symposium)

Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters:  Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key t...

HD Uncut: Thoughts from Strasbourg

End of Life: The Caregiver Perspective, Part 2

For more information about the UF Fixel Institute located in Gainesville, FL, please click here.

HDYO Ambassador: Molly

To read the blog post BJ Viau wrote, please click here

HDYO Ambassador Gemma

"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.

End of Life: The Caregiver Perspective

We are Stronger Together

Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.

Please visit hdgenetics.com for more information.

HD Uncut with Gina 

As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.