Take Back Tomorrow HD

10/10/2026

Help us take back tomorrow. 💙

For families affected by Huntington’s disease, hope means being able to access treatment when it becomes available.

Take Back Tomorrow HD Foundation funds access to treatment—not research. Through financial assistance, advocacy, and education, we’re preparing to help families overcome the cost barriers that could stand between them and emerging therapies.

Your gift today helps us prepare for that future and support families along the way.

Donate through the Givebutter link below, and share this post to help our mission reach more people. Thank you for being part of our community.

Direct funding and advocacy for those fighting HD

10/10/2026

For the first time in history, a treatment that may slow Huntington's di… Dustin Anderson needs your support for Be Ready for the First Huntington's Treatment

06/27/2026

💊 There’s more than one reason to have hope.

While much of the HD community’s attention has rightfully been on AMT-130, another treatment is quietly making real progress — and it’s worth talking about.

SKY-0515, developed by Skyhawk Therapeutics, is an oral once-daily pill for Huntington’s disease. No injections. No surgery. A pill.

Early trial results show it lowers huntingtin protein in the brain — and may also target PMS1, a protein linked to the CAG repeat expansion that drives HD progression. That potential “two-for-one” effect has researchers paying close attention.

And now there’s a regulatory milestone to go with the science: Australia’s Therapeutic Goods Administration has determined SKY-0515 is eligible for their provisional (accelerated) approval pathway. A full review is underway.

This is not an approval. But in a disease where every step forward matters, it’s a meaningful one.

A larger Phase 2/3 trial called FALCON-HD is already enrolling in Australia and New Zealand — testing whether SKY-0515 can genuinely slow disease progression across motor, cognitive, and daily function measures.

The HD pipeline has never looked like this. Multiple drugs. Multiple approaches. Multiple reasons to keep fighting.

💙 Share this with someone who needs to hear it today.

06/18/2026

Let's go!!!! Phase 3 Clinical Trials! Let's raise some money and get some folks this treatment!

Reimagining the future of healthcare through the power of gene therapy.

05/15/2026

This is why we fight! Together for access to treatments!

05/14/2026

NIAGARA FALLS LIGHTING FOR HD TONIGHT!

Don’t miss the iconic Niagara Falls lighting up in blue for HD and purple for Juvenile HD tonight from 10:00-10:15 P.M.

Visit the falls, invite some friends, snap a few photos, and help spark meaningful conversations about HD in your community.

Can’t make it in person? Watch the livestream here: https://www.earthcam.com/canada/niagarafalls/ 💙💜

05/03/2026

What People Often Get Wrong About Huntington’s Disease

Huntington’s disease is one of those conditions many people have heard of, but few truly understand. Too often, it gets reduced to “a movement disorder” or confused with other neurological diseases. In reality, Huntington’s affects movement, thinking, mood, behavior, and families across generations.

One common misconception is that Huntington’s disease only causes involuntary movements. While uncontrolled movements can be part of it, the disease can also bring changes in memory, decision-making, depression, anxiety, irritability, and personality. For many families, the emotional and cognitive symptoms can be just as difficult as the physical ones.

Another misconception is that people with Huntington’s are “acting out” or choosing their behavior. They are not. Huntington’s causes progressive changes in the brain, which can affect impulse control, communication, emotions, and judgment. Compassion matters because what looks like stubbornness, anger, or withdrawal may actually be part of the disease.

Some people also think Huntington’s only affects older adults. Symptoms most often appear between ages 30 and 50, but they can begin earlier or later, and juvenile Huntington’s can affect children and teens.

There is also confusion about heredity. Huntington’s is genetic, and each child of a parent with Huntington’s has a 50% chance of inheriting the gene expansion that causes the disease. That means Huntington’s does not affect just one person. It affects entire families who may be living with symptoms, caregiving responsibilities, genetic testing decisions, grief, fear, and uncertainty.

And perhaps the biggest misconception is that a diagnosis means a person’s life is over. Huntington’s is serious and currently has no cure, but people with Huntington’s still deserve dignity, connection, support, good care, and full recognition of their humanity. A diagnosis does not erase who someone is.

Awareness matters. The more we understand Huntington’s disease, the better we can support the people and families living with it.

If you know someone affected by Huntington’s, listen without judgment. Learn before assuming. Offer help without waiting to be asked. And most of all, remember that behind every diagnosis is a person, a family, and a story that deserves compassion.

04/17/2026

Decoding Huntington’s: How AI is Transforming Diagnosis and Treatment

Huntington’s Disease (HD) has long been one of the most daunting challenges in neurology. As a hereditary disorder caused by a single genetic mutation, its progression affects motor control, cognition, and emotional stability. However, the landscape of research is shifting. By 2026, AI has moved from a theoretical promise to a practical engine for early detection and personalized care.

1. Precision Diagnosis: Beyond the Genetic Test

While a genetic test confirms the presence of the mutation, it cannot tell a patient exactly when symptoms will start. AI is filling this gap.

• Voice AI as a Screening Tool:

Sophisticated algorithms now analyze speech patterns and vocal tremors imperceptible to the human ear. This allows for detection in the "premanifest" stage—years before physical symptoms appear.

• AI-Enhanced Neuroimaging:

AI software is revolutionizing MRIs. By using Deep Learning, researchers can now automate brain analysis to detect microscopic reductions in brain structures long before they are visible to a human radiologist.

2. Accelerating Treatment and Drug Discovery

The "holy grail" of research is a treatment that lowers the levels of the toxic mutant huntingtin protein. AI is accelerating this quest:

• Genomic Language Models:

Researchers are using AI to understand why the age of onset varies so wildly between patients. By identifying "modifier genes," doctors can better predict a patient's specific disease trajectory.

• Drug Pipeline Optimization:

AI-assisted image analysis is now used to detect protein aggregates in brain tissue at a speed and scale previously impossible, helping move drugs through clinical trials faster.

3. Improving Quality of Life

AI isn't just about the lab; it’s about the living room. For patients currently managing the disease, AI-driven tools provide daily support:

• Motor Tracking: Wearable sensors combined with AI monitor involuntary movements in real-time, allowing doctors to adjust medications more precisely.

• Cognitive Support: AI-driven therapy apps use rhythmic cues to help patients maintain motor control and stability.

The Path Forward

As we move through 2026, the integration of AI into Huntington’s care represents a shift from reactive to predictive medicine. While a definitive cure remains the goal, AI is providing the clarity and speed necessary to transform Huntington’s from a mystery into a manageable condition.

By identifying the disease earlier, AI is offering the community something once in short supply: time.

04/13/2026

Think Huntington's disease only affects older people? Wrong. Symptoms can start as early as your 20s or 30s.

Another myth: it's just about uncontrolled movements. Reality check - memory loss, personality changes, and difficulty making decisions often show up first.

And here's the big one people get wrong: "There's nothing you can do about it." While there's no cure yet, physical therapy, speech therapy, and medications can significantly improve quality of life and slow progression.

Stop spreading outdated info. Huntington's families deserve accurate facts, not fear-based myths that were debunked years ago.

04/06/2026

Treatments are on the way. Life and death will come down to time—and money.

There’s no approved treatment yet—but it’s close. And it won’t be cheap.

We can’t change the timeline.
But we can make sure cost isn’t the reason someone misses their chance.

We’re getting ready now.

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