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WAVE Life Sciences is a preclinical genetic medicine company focused on advancing first-in-class or best-in-class stereopure nucleic acid therapies for patients impacted by rare diseases. We are utilizing our innovative and proprietary synthetic chemistry platform to design and develop nucleic acid therapeutics that precisely target the underlying cause of rare genetic diseases, with a goal of delivering new and exceptional treatment options for patients. Given the versatility of our chemistry, WAVE’s pipeline spans multiple oligonucleotide modalities including antisense, exon-skipping and single-stranded RNAi, potentially enabling us to address a broad range of therapeutic areas and diseases.

Intro into Ashley Clarke's Blog: https://kyraashley.wordpress.com/ They say there’s a reason for everything. So there must be a reason my life is affected by Huntington’s Disease. And that is the reason for this blog. My name is Ashley. And I have a story to tell… At 15 years old, I found out that my father had Huntington’s Disease. It was very hard to come to terms with, and at that point, my father and I weren’t exactly on great terms, due to what the condition was doing to his mind. My brother and I are my father's sole carers, and we do everything for him, with help from social workers and care assistants, not to mention friends and family. Huntington’s was difficult to come to terms with, but eventually, and many years later, I have made peace with this affliction. The problems I face now are what will happen in the later stages when Dad can no longer stay at home. Huntington’s is something you can learn to live with as a carer. I know I am at risk, as my brother also is. And I have gotten used

Should people who are suffering from terminal illnesses be allowed to choose death with dignity? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication? Retired attorney Alan A. Pfeffer, Esq., joins us to talk about this sensitive and controversial topic. Unless you are facing a terminal illness with debilitating suffering that holds no hope of relief or a cure, assisted suicide can be a difficult topic to discuss. Some believe it's a choice that every human being should have; others believe that only God should determine when and how we die. This show will provide you the opportunity to explore your own thoughts and to ultimately decide if this is something you would even consider. Our incredible guest has a long history with HD. Alan is the Advocacy Chair of the Albany Affiliate of HDSA and is a volunteer on the New York State Department of Health's advisory committee for its Centers of Excellence program for neu

Should people who are suffering from terminal illnesses be allowed to choose death with dignity? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication? Retired attorney Alan A. Pfeffer, Esq., joins us to talk about this sensitive and controversial topic. Unless you are facing a terminal illness with debilitating suffering that holds no hope of relief or a cure, assisted suicide can be a difficult topic to discuss. Some believe it's a choice that every human being should have; others believe that only God should determine when and how we die. This show will provide you the opportunity to explore your own thoughts and to ultimately decide if this is something you would even consider. Our incredible guest has a long history with HD. Alan is the Advocacy Chair of the Albany Affiliate of HDSA and is a volunteer on the New York State Department of Health's advisory committee for its Centers of Excellence program for neu

Join us to hear Dr. Anderson and Dr. Feigin give us a update on LEGATO-HD.

Pre-recorded at WAVE Life Sciences headquarters in Cambridge, Massachusetts, Katie Jackson interviews three of the leaders of this inspiring 10-year-old company. Paul Bolno is the CEO, Michael Panzara is the head neurologist, and Wendy Erler is the vice president of patient advocacy. WAVE is advancing a diverse pipeline of stereopure nucleic acid therapeutics across a broad spectrum of rare genetic diseases, including Huntington's disease. They share with us the exciting news about their allele-specific gene "snip" (SNP), which could become the first human trial using ASOs in the United States as early as 2017. Preliminary data shows that by targeting the mutant allele, the CAG repeat can be knocked down as much as 20 points. WAVE says their promise is, "Our dedication to excellence in drug development is grounded in our long-term commitment to patients. We will strive to be a true partner to advocacy organizations and patient communities, ensuring that we understand their specific challenges and needs. As we

Join us to hear all about what is going on at HDYO. The Huntington's Disease Youth Organization (HDYO) is a non-profit voluntary organization that provides appropriate information and education, along with support for young people impacted by Huntington's disease.

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 250 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Join us to hear about all the exciting speaker and activities that are taking place at this years annual symspoium in Florida. https://www.research.net/r/symposium-registration  

SHAYP (Scottish Huntington's Association Youth Project) has existed for 15 years and provides support to young people aged 8-25 living in families impacted by Huntington's disease throughout Scotland. SHAYP provide one to one support, group work sessions, group activities, residential camps and summer camps throughout the year, along with providing telephone/email/text support and social media interaction. Kirsten Walker is the project manager for the service providing support to young people and the dedicated staff team to ensure the service remains at the forefront of youth support.   

Join us to hear Deena Cannastraci interview social worker Lisa Mooney from UC Davis about topics that will help families living with a child with Juvenile Huntington's disease.

Tune in to hear Dr. Goodman speak about Akathisia. Akathisia isa state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic drugs.  visit www.hddrugworks.com to read the whole article about "The Problem(s) with Drug Treatment for HD."  

2010 was the start for all involved with the foundation, Talks with MPS; Angela Constance, Fiona Hislop and then Scotland's First Minister; Alex Salmond to ask them to support our foundation so we could achieve our goals and let Scotland be HD / JHD AWARE.  The foundation was awarded charity status April 2011. 2016 Scotland first minister Nicola Sturgeon is well aware of the work the foundation carries out due to Annie MacKenzie having the opportunity to meet the FM had two event for cares of various conditions. Most SNP (Scottish nationalist political party) have at one stage support the be hd aware campaign. Including snp city of Glasgow councillors and west Lothian councillors the main aims:  •    Raise awareness for Huntington's Disease/ Juvenile Huntington's Disease •    The impact HD/JHD can have on the whole family, •    Help to improve care/ support for HD families throughout Scotland, through the means of hosting a variety of event's throughout Scotland.  main points: •    The importance of ra

Tune into to hear about all that went on at this years Florida's Police Chiefs Conference. Help 4 HD International had a booth there and was able to bring HD awareness to this very important event!

We are excited to have Roshni Bhatt on Help 4 hd Radio to dicuss her research and background in studying Huntington's disease.  Here is Roshni Bhatt'sresearch interest from her CV. Research Interest: I have designed an in-silico biochemical pathway for inflammation focusing glucocorticoids receptor signaling. This will help in easy target reorganization and lead generation. My research includes work on β-amyloid, Neurexin & Neuroligin proteins. β-amyloid involved in Alzheimer’s disease forming plaques in cerebrum. This disease is found to be more common in population which contain high carbohydrate levels. Point mutations in Neurexin & Neuroligin are the cause of myeloid leukemia. My area of interest is the complexity of neuroscience; encompassing an array of neurodegenerative disease and Huntington’s disease in particular.     

GRAPHICS: During the day I am a graphic designer. My wife, Kathy went from being a fine artist doing mixed media sculptural pieces to helping me in my design business. CAREGIVING: For over ten years, I was my late wife Kathy's full-time caregiver. She passed away in October from Huntington's Disease. "HD" is the genetic brain disease that took the life of songwriter Woody Guthrie. Kathy was an artist and sculptor. I am planning a memorial exhibit of her work at the Wilbraham Library in Massachusetts in September. Music: I write songs about everyday life. Most are humorous. Some are serious. They are observations about the things that happen to me and conversations about the stuff I see. While I took care of Kathy I had to stop performing, but I kept writing and recording with friends on the internet. Back in the late 90s, I appeared at coffee houses and venues throughout the Boston area and New England. Several of my funny car related tunes were on the CarTalk radio show and one song, Peugeot was included

Dr. Goodman has a open show today where she will answer questions from the community. 

Tune in to hear Dr. Goodman talk about the genetic testing criteria associated with Huntington’s disease. There has been a lot of confusion within the community about genetic testing criteria and what it means. If anyone has questions for Dr. Goodman on this topic or would like to share your story, please tune in and join the chat room, or you can email your questions directly to our host, Katie Jackson, at [email protected].

Two moms, one at the beginning of her journey and one at the end of her journey, talk about raising a child with JHD. This will be a show full of advicefor families living with JHD from the people who know best, the JHD families.

Samuel Frank is a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School. After completing his residency and fellowship at the University of Rochester, he joined the neurology faculty at Boston University from 2004 to 2015. Dr. Frank serves as the principal investigator for a Huntington Study Group study and on the HSG executive committee. He is a member of the HDSA Board of Trustee and locally serves as the director of the HDSA Center of Excellence at BIDMC. Dr. Frank is the inpatient neurology consultant for the specialized Huntington’s Disease service at Tewksbury State Hospital.