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Understanding Chorea vs. Akathisia: Insights from Expert Discussion
Recently, during a HIPE discussion the conversation shed light on the complexities of managing chorea, a involuntary movement frequently...
katie8288
2 days ago2 min read
6 views
0 comments

uniQure Announces FDA Breakthrough Therapy Designation Granted to AMT-130 for the Treatment of Huntington’s Disease
LEXINGTON, Mass. and AMSTERDAM, April 17, 2025 (GLOBE NEWSWIRE) -- uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing...
katie8288
5 days ago4 min read
37 views
0 comments

Navigating the Conversation: Talking About HD with a New Partner
When it comes to discussing difficult topics in relationships, the conversation surrounding Huntington's disease (HD) can be particularly...
katie8288
Apr 133 min read
39 views
0 comments

Navigating Care Agency Challenges: Lessons from Experience
Understanding Caregiver Dynamics: A Conversation on Meeting Needs Finding the right caregiving support can be challenging, especially...
katie8288
Apr 62 min read
16 views
0 comments

Navigating Love and Identity
In a recent HIPE conversation, we dove into the complex intersection of love, identity, and the impact of Huntington's Disease (HD) on...
katie8288
Mar 302 min read
267 views
1 comment

Understanding the Role of Medications in Sexual Dysfunction and Hypersexuality in Huntington's Disease
In the realm of healthcare, especially regarding neurological disorders like Huntington's Disease (HD), discussions about sexual health...
katie8288
Mar 233 min read
292 views
1 comment

Understanding Apathy Vs. Depression in Huntington's Disease
In a recent discussion, Dr. Karen Anderson provided valuable insights into the experiences of individuals affected by Huntington's...
katie8288
Mar 162 min read
310 views
1 comment

Understanding Testing for Huntington’s Disease in Children
In a recent insightful conversation, Dr. Duffy addressed a pressing concern regarding the testing of children for Huntington’s Disease...
katie8288
Mar 102 min read
343 views
1 comment

Love Knows No Bounds: Navigating HD Together, Part 2
In a recent forum, three medical professionals came together to address pressing questions submitted by the Huntington's Disease...
katrina4384
Feb 284 min read
254 views
0 comments

Love Knows No Bounds: Navigating HD Together, Part 1
Love Knows No Bounds: Navigating HD Together - A Deeper Dive Communication and Care: Walking the Path Together Lisa Mooney's Question:...
katie8288
Feb 233 min read
295 views
0 comments

Who Will Tell Your Story...Make it YOU
Who will tell your story? You have lived an important life, and your experiences hold valuable lessons for future generations. By sharing...
katie8288
Feb 164 min read
256 views
0 comments

Creating Meaningful Connections: Crafting a Support Network for Your Final Days. Part II
Reflections for the Final Days of Life: As you think about this important time, here are some gentle questions that might help you...
katie8288
Feb 92 min read
305 views
0 comments

A Helpful Template to Guide You in Submitting Your Public Response to CMS
We understand that navigating the CMS public comment portal can be challenging and may not fully meet accessibility standards. To assist...
katie8288
Feb 616 min read
286 views
0 comments

Creating Meaningful Connections: Crafting a Support Network for Your Last Days. Part I
What do you envision the last phase of your life to be like? (We will explore this in more detail shortly.) How would you like to handle...
katie8288
Feb 22 min read
321 views
0 comments

Love Knows No Bounds ~ Virtual HIPE
We are EXCITED to be right around the corner from the first Help 4 HD event of 2025! On February 1st, from 8:00 AM to 12:35 PM (Pacific...
katrina4384
Jan 292 min read
215 views
0 comments

Katie Jackson's Presentation at the FDA's Patient Listening Session on Gene Therapy
My name is Katie Jackson, CEO of Help 4 HD International and a Huntington's disease family member. My husband passed away from HD five...
katie8288
Jan 193 min read
347 views
0 comments

Help 4 HD Family Relief Fund Gives $113,505 in Relief to Families in Need Impacted by HD/JHD in 2024
Today, we’re excited to share some updates about the Help for HD Family Relief Fund and the amazing strides we've made over the years....
katie8288
Jan 123 min read
305 views
0 comments

Bloopy the Alien Learns about Huntington's Disease: by 12-year-old Emma Wajswasser
December 11, 2024 — Toronto, Ontario, Canada Most people have never heard of Huntington’s disease. This lack of awareness means people...
katrina4384
Dec 22, 20242 min read
294 views
0 comments


Quick Overview of Seizures in JoHD at Help 4 HD Symposium:
The focus of this discussion was to provide you with the right vocabulary and tools to communicate effectively with your physicians about...
katrina4384
Dec 15, 20242 min read
253 views
0 comments

katrina4384
Dec 11, 20240 min read
309 views
0 comments
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