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Find A Cure Transit Huntington's Resources:
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The documentary follows Jonathan and his father Peter as they journey through India. Peter must ultimately lose his battle against Huntington’s disease- a fatal neurodegenerative disorder. Jonathan recognizes the tragedy of this but also sees a rare opportunity to pour into their relationship. This opportunity far outstrips the other kinds of work he could pursue. Following this course opens a richer life for Pop and Jonathan where every moment can be lived to its fullest and each day is a gift.
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Blog Talk Radio for those with HD
book: Honest Medicine by Julia Schopick
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HONEST MEDICINE introduces four lifesaving treatments that have been effectively treating--and in some cases curing--people for 25-90 years.
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Book: Your Medical Mind by Dr. Jerome Groopman that focuses on patient decision making
Cells That Heal Us From Cradle To Grave: A Quantum Leap in Medical Science
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book on stem cell research
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CHDI’s goal is to increase the understanding of Huntington’s disease (HD) and to hasten the development of therapies.We collaborate with academic and industrial scientists throughout the world.
CHOIR Stars for the Creative and Performing Arts
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C.H.O.I.R. Stars for the Creative and Performing Arts® is a non-profit organization committed to providing hope and inspiration through the creative and performing arts to teens and young adults with a variety of health conditions. Our organization holds weekend arts workshops throughout the year for teens and young adults with chronic health conditions and their siblings, and offers additional programming such as our multiple free family arts outings a year. In addition, we provide arts outreach to youth in hospitals, and provide awareness for the health conditions our C.H.O.I.R. families are facing.
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book about huntington's disease of poetry and prose
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A resource for disabling conditions that can be considered severe enough by the Social Security Administration (SSA) to qualify a person for Social Security disability benefits.
These conditions can interfere with an individual’s ability to achieve gainful employment, thereby making that person eligible for SSDI or SSI benefits.
European Huntington's Disease Network
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On this website you find information about the EHDN project (objectives, organisation, people activities on executive committee, central coordination and language coordination, working groups, etc), sponsor of EHDN, participating study sites and ongoing studies (REGISTRY and PREDICT).
Fear Not [book on surviving kidney cancer]
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This father and son team up to tell a story of faith and healing. This devotional styled book also offers personal, practical, and biblical insights that sustained these men during a struggle for health and faith. "God had a purpose for keeping me here."
Huntington’s disease research news written by scientists.
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I am creating this page so that HD Caregivers can post things they deal with to help others that are confronted with similar things. We can help each other
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Private Facebook Group
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The HDLighthouse mission is to present and explain the latest research findings so that HD families can become proactive in their care, have hope for the future, and make good decisions in the present.
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The National Research Roster for Huntington Disease Patients and Families was established in 1979 at Indiana University. The goal of the Roster is to help researchers learn more about Huntington disease. To accomplish this goal, the Roster has involved nearly 3,000 families in Huntington disease research.
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Yahoo group and forum for people with HD.
HD Support Groups California Central Coast
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HD Support Group - California Central Coast
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HDTrials.org has been created to enable clinical trial participation, the HDTrials.org web site will provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list.
HDSA - Oklahoma Chapter - Facebook group
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Oklahoma Chapter of Huntington's Disease
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Our mission is to promote activities that provide Hope to victims of Huntington's Disease through Education, thereby raising Awareness and the funding necessary to continue life-giving Research.
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Educational site sponsored by Stanford.
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Welcome to the new Huntington Study Group web site! The HSG is made up of clinical researchers in North America, Europe, Australia, New Zealand and South America, who care for HD patients and families and who are working diligently to combat this disease.
Huntington's and how it affects lives
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Jake Reynolds family video on HD.
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This film is about my mother, Huntington’s disease and how the knowledge that I was at risk for the disease has profoundly affected my life. You could say that Huntington’s has, in one way or another, been a constant companion over the course of my life.
Huntington's Disease Advocacy Center
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Informational site and forum for those with HD.
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Huntington's Disease Drug Works (HDDW) founded by LaVonne and Nathan Goodman in 2004 has evolved over the years. At present the focus is providing information on present treatment options for Huntington's disease that include:
* Drugs that are presently available and used (with variable success) for treatment of symptoms that include chorea, depression, anxiety, irritability, agitation, psychosis, apathy and rigidity.
* Supplements and life-style modifications that are available that may be useful treatments for neuroprotection.
We will also provide information on drug development and clinical trials:
* Reports on drug candidates and their sponsoring companies.
* Updates on progress in finding biomarkers.
* Clinical trial information and education.
Huntington's Disease Society of America
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We are a national non-profit voluntary health agency dedicated to finding a cure for Huntington's Disease. We provide vital support, information and educational services to improve the lives of those affected by HD, offer resources and guidance for HD families through our national network of volunteer-based chapters and affiliates as well as through our HDSA Centers of Excellence for Family Services and promote and support research to find a cure for HD.
Huntington's Disease: On the Outside Looking In
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HD Blog
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The Huntington Society of Canada is a national network of volunteers and professionals united in the fight against HD since 1973.
International Huntington's Association
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The International Huntington Association (IHA) is a federation of national voluntary health agencies that share common concern for individuals with Huntington's Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support; psycho-social, clinical and biomedical research; and ethical and legal considerations related to Huntington's Disease in its respective country.
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Jacey Mukka Family Video on HD
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Most of the research on Huntingtons Disease is directed at the adult population which does not directly apply to those with juvenile-onset HD because of several factors. The most significant difference is that in JHD the disease occurs before the brain is fully developed. This accounts for the wide variation at one age from JHD to another age. Maturation and neurodegeneration occur at the same time in JHD. Another unique aspect of JHD is the extremely large CAG burden which greatly effects severity. Social development, physical rehabilitaion requirements and educational goals are additional items unique to patients with JHD.
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Joey's Song is a series of CD's that brings together national and international artists to raise money for epilepsy research and advocacy, in honor of Joey Gomoll. Joey was just shy of 5 years old when he passed away in March 2010. In the months since then his father, and a passionate group of musicians, friends and supporters, have pulled together a collection of rare and unreleased music, as well as special recordings and children's songs. Joey's Song: Volume One and Joey's Song for Kids: Volume 1 were released January 25, 2011! Get your copies today!
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Resources to support spiritual well-being for those with chronic illness. Scholarly articles on the inter-relationship between spirituality and medicine. My personal struggles living with an incurable metastatic cancer.
Low Country HD - Georgia And South Carolina
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The purpose of this web site is to provide information pertinent to Huntington's Disease families, caregivers, and health care professionals in Georgia and South Carolina, in a format easy to understand and use.
National Organization for Rare Diseases (NORD)
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NORD’s vision and guiding principles on which our advocacy initiatives are based:
A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.
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Film Festival sponsored by American Academy of Neurology Foundation
Partnership for Prescription Assistance
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Site that help people who are uninsured get treatment.
Their services are free.
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Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas.
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Caring for Caregivers
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RockScar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.
Thomas Cellini Huntington's Foundation
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The Thomas Cellini Huntington’s Foundation was formed in 2005 to support families diagnosed with Huntington’s Disease.
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WeHaveAFace.org was founded to increase international awareness of Huntington's disease through a creative, cinematic form - The film: "The Faces of Huntington's Disease: I am No Longer a Faceless Face"
Find A Cure Transit Huntington's Resources:
Click an option on the listing key to reorganize search results.