Help 4 HD Live!

Brent Walker watched Huntington's disease tear his family apart, although they didn't know at first that it was Huntington's disease. About 20 years ago, he became familiar with Huntington's disease and realized his father was at risk. He later found out that his father was HD positive, putting himself and his two siblings at risk. His journey compelled him to write a gripping short story, "Look U...

Leah Amberly Barker describes herself as "a 24-year-old who’s still in college, a poet, an author, a spoken word artist, avid nail-biter, lover to the ocean in a fiery affair with the stars, a C- student, hoarder of antiques, seeker of soul mates, advocate for Huntington’s Disease, a definite dog person, Pepsi-over-Coke, sleep talking, manic, prideful little girl who has just about every mental il...

Join us to hear an overview of some of Help 4 HD International's programs and projects we ran in 2016. We will also do a sneak peek of some things to come in 2017, including our 5th annual symposium

Kinser became more involved with both HD and JHD after her daughter Meaghan passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband to HD shortly after she lost her daughter. While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD.  The local radio station...

Tune in to hear Havanna Lowe talk about her role as a patient advocate in the HD/JHD community. Havanna, who is 17, helps care for her aunt and her cousins while also attending school and working. She's a force to be reckoned with as she advocates for the HD Parity Act and sits on the board of the National Youth Alliance (NYA) at HDSA. In today's interview, Havanna shares what it's like to watch h...

Join us on December 7, 2016, to hear Help 4 HD International interview the amazing Lauren Holder. We are going to talk about Lauren's story, some of Lauren's advocacy projects she has done, and about her recent article in Good Housekeeping, "How a Genetic Test Changed My Life." Lauren Holder, from North Carolina, is well known in the HD community. She's been an active patient advocate for a number...

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 del...

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 fat...

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 debi...

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 debi...

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 geneti...

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 int...

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 ca...

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 wo...

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 art...

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 J...

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.