Help 4 HD Live!

Samuel Frank, MD,is an associate professor of Neurology at Beth Israel Deaconess Medical Center and 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 is an active member of the Huntington Study Group, having served as a principal investigator and as a member of HSG’...

Listen in to hear more about The Huntington Study Group and what is coming in the near future.   Heather Hare, Director of Communications & Outreach at HSG, will be on the show today, along with Ann Nelson, a loving wife and caregiver for her husband, David. HSG was founded in 1993 as an organization within the University of Rochester and became a stand-alone 501(c)(3) non-profit in 2012. The...

Jason Evans is an incredible man, and we are excited to have him on Help 4 HD Live! Jason Evans is a farmer, philosopher, and an avid outdoors man. He was born in Oregon but has lived in places like Malaysia, England, and Norway. Jason’s family is impacted by Huntington’s disease. Jason has taken his love for the outdoors and made it into a way he can raise funds and awareness for Huntington’s dis...

Dr. Brown received his MD at Harvard, followed by internship and PM&R residency at the University of Washington, a Master of Public Health at UC Berkeley, and most recently, a fellowship in Multiple Sclerosis (MS)  at U. Washington.   He  is a board-certified member of the American Board of Physical Medicine and Rehabilitation. He has been working in the field of MS since 2003. Dr. Brown is th...

Do you need help with applying for disability? Help with paying for prescriptions? Our very special guest today is Heather Fortune, Case Manager II for Caring Voice Coalition, a 501(c)(3) organization that empowers patients who live with a life-threatening chronic disease. They offer comprehensive outreach programs and services aimed at financial, emotional, and educational support. Huntington's d...

Join us to learn more about HD Trial Finder, a very important program at HDSA. Without clinical trials, we will never have an FDA-approved drug or therapy for Huntington's disease. HD Trial Finder is an important program because it alerts community members when they would possibly be eligible to participate in a clinical trial. 

In honor of Valentine's Day, we are celebrating the very special love that caregivers exhibit every single day as they care for their loved ones who have HD or JHD. Our guests are four amazing women: Barb Sipes, Carla Arriola, Sue Gamble, and Tina Parker Wooldridge. They will share how the disease has changed their relationships and what it has taught them about love. We invite you to join in the...

Tune in to hear this very important show. There are so many things to think about before you take the step to be tested for Huntington's disease. Dr. Bonnie Hennig is coming on Help 4 HD Live! to talk about some of those things we need to think about.  Dr. Hennig is the Director at the UConn Health Huntington’s Disease Program.   She has over 30 years of experience as a clinical therapist and has...

Tune in to hear Dr. Goodman answer questions from the community! Dr. Goodman will also discuss GI (gastrointestinal) and GU (genitourinary) issues often associated with HD.

Brent says, "I have always been very fond of writing and have written a lot of short stories in the past (I even wrote a screenplay once). but none of them have ever been published. For me it is very simple. I want to help people. I don't care about money; I never really have. "Most of my life, I have been haunted by this disease. For twenty years at least I have had the weight of this on my shoul...

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