WELCOME TO OUR
2021 HD REACH VIRTUAL CONFERENCE
The Huntington Study Group (HSG) is the world’s first and largest clinical research network focused exclusively on Huntington’s disease. The mission of the HSG Group is to seek effective treatments that improve the quality of life for people affected by Huntington’s disease. The HSG has two active clinical trials in Huntington’s disease that are enrolling participants. Visit the web links below to learn more about each trial.
The Huntington’s Disease Youth Organization is non-profit set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world. View our definitions of ‘young people’ and ‘impacted by HD’ below. We are an official entity in both the USA (501c3) and United Kingdom (Charity Commission #1145781). Our goal is to provide support and education for young people impacted by HD globally. We do this through providing professional support online, creating needed educational content for all age groups (kids, teens, young adults, parents and professionals), making our site and content available in as many languages as we can, connecting young people with their peers, making events such as youth camps and conferences around the world, motivating and providing opportunities for young people to get involved and working with other HD organizations to improve what they offer young people also.
There can be many challenges - physically, financially, and emotionally - faced every day by people living with diseases of the central nervous system and their families. Neurodegenerative conditions and movement disorders such as multiple sclerosis (MS), Parkinson’s Disease (PD), Huntington’s Disease (HD) and Tardive Dyskinesia (TD) affect every aspect of life, with even the most mundane tasks requiring great courage and effort. It is expected that by 2030, we will see a rise of between 30-50% in the incidence of such diseases, with an associated need for increased treatment and care. Teva provides a number of products to treat patients with neurological and neurodegenerative disorders – with a focus on helping patients manage their condition.
uniQure is delivering on the promise of gene therapy – single treatments with potentially transformative results. We are utilizing our technology to advance a pipeline of gene therapies to treat patients with neurodegenerative diseases, and other severe genetic diseases. We are currently conducting a phase 1/2 trial in Huntington’s disease, the first gene therapy ever in the clinic for HD. The next program in the pipeline is for spinocerebellar ataxia (SCA3) and we hope to file an application to the US FDA this year to get approval to begin an early phase clinical trial. We are happy to support HD Reach in its efforts to support the HD community and appreciate their help in educating the community on emerging therapies such as gene therapy.
Neurocrine Biosciences is a neuroscience-focused, biopharmaceutical company dedicated to discovering, developing and delivering life-changing treatments for people with serious, challenging and under-addressed neurological, endocrine and psychiatric disorders. The company's diverse portfolio includes FDA-approved treatments for tardive dyskinesia, Parkinson's disease, endometriosis*, uterine fibroids* and clinical programs in multiple therapeutic areas. For nearly three decades, Neurocrine Biosciences has specialized in targeting and interrupting disease-causing mechanisms involving the interconnected pathways of the nervous and endocrine systems. For more information, visit neurocrine.com, and follow the company on LinkedIn. (*in collaboration with AbbVie)
Wave Life Sciences is a clinical-stage genetic medicines company focused on delivering transformational therapies for people battling serious, genetically defined diseases. Our unique investigational approach to Huntington’s disease seeks to selectively lower mutant huntingtin protein while leaving healthy huntingtin protein relatively intact. We are committed to listening to, learning from, and partnering with HD community members.
Adira Foundation is a national nonprofit public foundation whose mission is to invest in better lives for people with neurodegenerative diseases. We bring five disease communities together to work on what they have in common. They name and set priorities for grants, then we co-finance and fund programs. We track and evaluate our progress to improve with each round. Our initial focus is: Alzheimer’s disease and related dementias, ALS, Huntington’s disease, multiple sclerosis, and Parkinson’s disease. If we can do this well, we hope it can work for all of us.
Founded in 1978, HPCCR provides compassionate care to individuals with life-limiting and terminal illnesses; serving 27 counties from 13 regional locations in North & South Carolina. The mission of Hospice & Palliative Care Charlotte Region is to relieve suffering and improve the quality and dignity of life through compassionate hospice care for those at the end of life, palliative care for those with advanced illness, and through community education. For more information, call 704.375.0100, or visit HPCCR online at hpccr.org.
Dementia Alliance of North Carolina is a 501c3 nonprofit committed to improving the lives of all North Carolinians impacted by dementia, engaging and empowering them through support, education and research. Our programs are built around a foundation of CARE – providing Comfort, Assistance, Resources and Education for individuals and families living with Dementia. Through our CARE approach, we seek to help N.C. become a state of caring for caregivers and individuals living with Dementia. For DA-NC, Dementia is personal. Because of our growing state-wide presence, we’re able to provide a high degree of personal support and care like only a local organization can. Together, we help families navigate the dementia journey.
Harborside Wellbeing is a private mental health practice in Cornelius, NC. The practice is owned by Dr. Beatrice Tauber Prior who is a Clinical Psychologist with 25+ years in the field. Dr. Prior’s areas of expertise are in developmental and neuropsychology. She works with those impacted by neurodegenerative diseases, anxiety, depression, grief and trauma. Dr. Prior offers therapy at the offices of Harborside Wellbeing and by telehealth video conferencing. After years of working with families impacted by progressive illness she wrote the best-selling book Grandma and Me: A Kid's Guide for Alzheimer's & Dementia which provides the tools to help children and family members impacted by dementia to maintain positive connections for as long as possible. For information go to www.HarborsideWB.com.
ChANGE HD is a brain imaging study with sites in Iowa City, Houston, New York, Philadelphia and Sacramento. Our research focuses on young people ages 6-30 who have a family history of Huntington’s Disease (HD). HD is considered an adult-onset disease. However, research has shown that brain changes are evident before motor symptoms begin. In fact, the gene responsible for HD plays a role in brain development and is present throughout the lifespan. With gene knockdown therapy showing promise for treatment of HD, it is essential to understand how removing or disabling the gene could impact brain development.