Help 4 Hd Live!

"My name is Anna Lunsford, I am 22 years old and live in Columbus, Ohio. I graduated from Ohio State University with a Bachelor's in Psychology and Women's Studies and will return this fall to begin my Masters in Social Work. My dad and four of his siblings inherited Huntington's Disease from my grandfather. In June 2016, I was the first of a very large family to receive a positive result pre-symptomatically. I currently work in the Animal Cruelty Investigations department at a humane society coordinating a program for pets of survivors of domestic violence. I spend the rest of my time traveling and advocating for Huntington's Disease. I immediately recognized the importance of being involved with research and have participated in Enroll-HD, Predict-HD, and an exercise study at the University of Iowa. Additionally, I was invited to be a part of HD-COPE and flew to London this February for training as a patient advisory group member. I sit as the Chair of Communications on the NYA Board and am training to run

Lauren Holder’s grandfather was diagnosed with Huntington’s disease (HD) when she was just a teen. After a few years, at the age of 20, Lauren decided to be tested for HD, ultimately testing positive. Despite this, Lauren remained dedicated to caring for her father, who is now symptomatic, and the larger HD community. In 2017, at the age of 32, Lauren found out she was pregnant unexpectedly. Because of the risk of passing on HD, she chose to undergo genetic testing for the baby. She now has a beautiful baby girl that is HD negative.

HOPES is a student-run project at Stanford University dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public. Their goal is to survey the rapidly growing scientific and clinical literature on Huntington’s disease, and to present this information in a coherent, reliable web resource.  We are excited to have Stanford student Cole Holderman on with us! Cole is the student director of HOPES at Stanford University, a project dedicated to helping families, patients, and the general public learn more about Huntington's Disease.  Cole has been with HOPES for most of his undergraduate career and has served as a writer for the group's website (hopes.stanford.edu) a point of contact for the local HDSA support group, and a leader for other members of the HOPES team. In addition to his work with HOPES, Cole is also a board member of HDSA Northern California, the HDSA National Youth Association Lead for California, and a student at Stanford University

  Angie Rowe joins the Global Genes team as Chief Operating Officer. She has over 17 years experience in executive management of LLCs and non-profits. She most recently spent the past 8 years managing and directing various aspects of the U.S. Bank OC Marathon and related events. In this role, she also developed and implemented the OC Marathon Foundation’s very successful Kids Run the OC program. Prior to the OC Marathon, Angie was president of the Junior League of Orange County, CA. In addition, she has served on various non-profit boards throughout the county, and in those roles helped several in their start-up phases. Angie is a breast cancer survivor, enhancing her excitement about joining Global Genes because she personally understands the value in an accurate genetic diagnosis. Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes R

Tune in to hear Katrina Hamel talk about placing our loved ones with HD. We hear over and over about the challenges our families face when it comes to placing their loved ones with HD. Katrina has worked in hospice care for over 15 years. Her experience has brought a lot of insight to Help 4 HD. This show will shed a lot of light on the behind-the-scenes things that go on within care homes.

We are excited to have Gia Mannone on the show with us to talk about her advocacy projects she is working on to spread awareness about HD. Gia has done some very creative and successful awareness campaigns on social media to spread awareness and tell her story. We look forward to this interview and to hearing more about what Gia is doing to spread awareness about HD.

Tune in to hear Katie Jackson and Katrina Hamel discuss all that Help 4 HD International did for Huntington's Awareness Month

About HSG The Huntington Study Group (HSG), which was formed in 1993, is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease. HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. How? By bringing together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.

Lauren Steffan will be on with us to talk about all that she is doing to advocate for our HD community when it comes to research and care. 

Seth found out as a 15-year-old that his mom had a rare, neurological, genetic disease known as Huntington’s Disease (HD). HD is like having symptoms of ALS, Alzheimer’s, and Parkinson’s all at once, and there currently is no cure. Five years later, Seth tested positive for HD and used the results as motivation to give back to the community through fundraising, advocacy, and volunteer efforts. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope. 

Join us as founder and creator, Casey Herrington discusses the Huntington's Disease Global Ecosystem Map (HD GEM) Project. HD GEM Project's mission is to further engage with the "silent" 70% of the HD community by helping those impacted by Huntington's disease (HD) find the resources they need to better assist them on their HD journey. This not for profit project was started and created by Casey Herrington with the guidance of the an advisory team made up of leaders within the HD community.

Join our host, as Ginnievive Patch discusses her recent article in The Huntington's Post about Survivor's Guilt. It is very common for family members that are HD negative to feel guilty about their results. 

Tune in to hear Cossetta Stroud talk about her organization Cozie Care and an event they are hosting in Southern California.

Join us as Andrew Feigin, SIGNAL Principal Investigator and Maurice Zauderer, PhD, President of Vaccinex discuss the SIGNAL trial.  

James Valvano, CEO and founder of WeHaveAFace will be joining our host to discuss their upcoming convention in Orlando, Florida. Please tune in to get all of the details. 

Tune in to hear Vicki Owen, head of Help 4 HD International's LEEP program, talk about their recent experience exhibiting at Alabama Cheif of Police Winter Conference.

Join Sharon and Katie to hear a discussion of Help 4 HD International's newest brochure, "Clinical Trials." They will talk about how to get involved in clinical trials, what "informed consent" means, the challenges of clinical trials and how to best prepare for them, personal experiences with clinical trials for Huntington's disease, and how to become a patient advocate for research and clinical trials. Sharon will also share a little about the bioethics conference she recently attended in Hanover, Germany, as a patient advocate.

Dr. Mark Yarborough, Dean's Professor of Bioethics from UC Davis, joins us to talk about the bioethics of clinical trials--the question of whether new practices in biological research are both moral and ethical. This topic has a huge impact on research currently being done on Huntington's disease. He'll also talk about the challenges of doing clinical trials for Juvenile Huntington's disease. IRBs (Institutional Review Boards) make decisions about whether proposed clinical trials are ethical and whether enough research has been done to minimize the risk to human participants. They also determine whether potential benefits outweigh the risks and help determine the informed consent process for clinical trials. The ultimate goal is to make sure that science is done the "right" way. Mark recently helped plan and co-hosted Herrenhausen Conference: “Lost in the Maze? Navigating Evidence and Ethics in Translational Neuroscience”, February 14 – 16, 2018, Herrenhausen Palace, Hanover, Germany.

The Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.

We are excited to have Wendy Erler, Vice President of Patient Advocacy, share the latest on gene editing on “Help 4 HD Live!” Wave Life Sciences goal: Our goal is to bring meaningful therapies to patients with serious genetic diseases.