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Help4HD-International, is a non profit organization serving the #Huntingtonsdisease and #JuvenileHuntingtonsdisease community.

California
Joined June 2013
Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)Photo by Help4HD (@Help4HDI)
If you follow me on here, you likely follow @Help4HDI BUT, if you don't, you should. we will have a lot of new posts coming out. Time for us to be a bigger park of the conversation. #HD #HuntingtonsDisease
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I flew to Baltimore with a thesis and I left with something harder to quantify. This is by far the most important (and moving) piece I've written — on HD, on $QURE, and on what the FDA has done to people who deserve better. Share if you can. Link below.
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Just wrapped @foxnewsnight talking about what actually unites every American — our health. Diseases like Huntington’s & DMD don’t care if we’re red or blue. Cancer doesn’t check your voter registration. Our health is the most sacred thing we have as a nation, and it’s the one issue that should bring us all together. That’s why I said tonight: fraud and waste in any HHS program — whether it’s Medicaid, hospice, or anywhere taxpayer dollars are spent — cannot be tolerated. We must protect every dollar so it reaches the patients who need it most, especially our seniors and working families. No more finger-pointing. No more politics. Just accountability, integrity, and putting American health first. @HHSGov is our nation’s most SACRED department - one entrusted by Americans to help improve and preserve our health. Whether it’s at @CMSGov or @FDA or @CDCgov or @NIH we must applaud & support all efforts to discover & prosecute fraud both internally & by those who spend our precious taxpayer money. Our nation’s health depends on it.
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Make sure to tune in TOMORROW at 4 pm EST to hear Katie Jackson and I talk about the recent UniQure update, what we as a community can do, and the upcoming @Help4HDI HIPE event. #HuntingtonsDisease #raredisease #Voice4HD #DyingToLive #HDWarrior #patientadvocate #careaboutrare
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Today, Erin Paterson and I share our feelings concerning UniQure's recent update on their gene therapy for #huntingtonsdisease. @Help4HDI You can listen to the show here: spreaker.com/episode/hd-uncu… Also check out Erin's post here: facebook.com/share/p/17XCBMj…
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Promising news for our friends in the #HuntingtonsDisease community @Help4HDI
Earlier today we announced that the pivotal Phase I/II study of our #genetherapy candidate AMT-130 in #huntingtonsdisease met its primary and a key secondary endpoint in the high-dose, with favorable trends across additional clinical measures. uniqure.gcs-web.com/news-rel…
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#WorldOrphanUSA: Huntington disease patient advocate Lauren Holder, producer of the podcast series @Help4HDI Live, speaking April 22, 2025 at the @OrphanConf USA in Boston. #RDAatWODC @LLuxner
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ARM issues statement on Dr. Peter Marks and the FDA’s Office of Therapeutic Products. alliancerm.org/press-release…
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Community members play a vital role in drug development. It is critical to work hard to ensure their voice is heard and to find ways to help the whole HD community support the urgent need to bring about new treatment options. On Saturday (Feb 1st) @Help4HDI will be holding their “Love Knows No Bounds” virtual HIPE events and @PrileniaTx's Seth Rotberg will be taking part in a panel session talking about this important subject. To find out more about Help4HD visit: help4hd.org/
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Due to unforeseen circumstances, last week's show had to be moved to this week. Make sure to tune in TOMORROW at 4 pm ET when Jamie Holloway will join me to discuss intimacy and share top resources for relationships. @Help4HDI #HuntingtonsDisease #raredisease #podcast
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We are proud to sponsor @Help4HDI's Highly Interactive Participant Education (HIPE) meeting in Chicago. It is a privilege to partner with organizations like Help 4 HD whose mission is to educate the world about Huntington’s disease. Learn more: help4hd.org/events-1/help-4-…
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Break the silence on #HuntingtonsDisease! Share your experiences and voice your priorities with the online myHDstory study, LEAD-HD. Join the platform committed to learning from your journey in the effort to advance HD research. Register now at myHDstory.org.
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As we work to develop meaningful therapies for people living with life-altering diseases like Huntington’s disease, we are committed to continuously listening and learning from the community. During this summer’s Town Hall, we were joined by @Help4HDI's President & CEO Katie Jackson. Katie and her team at #Help4HD have been providing invaluable services and support for families impacted by HD for over a decade, and she spoke about her mission to spread awareness about Huntington’s disease, as well as her story as an HD caregiver and advocate. We are incredibly grateful for Katie’s continued leadership and for reminding us about the importance of awareness, urgency, collaboration and community. #HuntingtonsDisease #HD #LetsTalkAboutHD
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#RareAcrossAmerica2024 registration is now open! This is YOUR opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story. Register now: bit.ly/42zU5oZ
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On @May12th, International Awareness Day for Chronic Immunological & Neurological Diseases, we're inspired by Dr. Daniel Claassen’s #HSG2023 presentation, where he shared stories of love, fear & the crucial need for compassionate care. #HDAwareness youtu.be/b2HAL74w9lg
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EARATHQUAKES: 2 small earthquakes reported in Allegany County, officials say | Click on the image to read the full story wxii12.com/article/small-ear…
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