Help 4 Hd Live!

Stacey and her husband, Terry Sargent, are incredible JHD warrior parents who live outside of Atlanta, Georgia. Terry adopted Stacey's son, Cory, and served, in every sense, as Cory's father, loving him as his own child.  When Cory started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, Stacey and Terry noticed a facial droop and drastic decline in speech. After an MRI, they were told by a neurologist that Cory had Encephalopathy….a big word for degeneration of unknown reason. After some intensive speech therapy, Cory improved. At age 10, Cory started walking on his toes. Again, Stacey and Terry took him to therapy. Cory was fitted with braces and improved. Then at age 13, he had another decline, this time affecting his posture, walking, speech, and his favorite thing, his ability to play video games. Numerous neurologists and tests later, they ended up at Children’s Healthcare of Atlanta, and again, no one believed Stacey when she told them that Cory had

Tune in to hear an interview with Deborah Bunting, who is the caregiver for her adult son, Jimmy, who lives with Huntington’s disease. Deborah and Jimmy made a bucket list for Jimmy, and Deborah is fighting to make sure all her son's dreams come true. Recently, Jimmy, with the help of local law enforcement, firefighters, and community members, made it to the top of a lighthouse. Jimmy loves lighthouses, and he's always dreamed of climbing to the top of one. It was a touching moment for Jimmy and his mother when a community came together to make this dream a reality. 

  Tune in to Help4HD LIVE! On Thursday, April 27th, 2017 to hear from Kisa Heyer, Chief Executive Officer of Dream Foundation. Kisa Heyer directs the operations of Dream Foundation, the only national dream-granting organization for terminally-ill adults, including programming, development and staff functions, and management of the Board of Directors. Since her appointment as Executive Director in 2013 and later as Chief Executive Officer in 2016, Heyer has focused on expanding the availability of the services Dream Foundation provides by partnering with the hospice and palliative care industry to fulfill the needs of patients. Additionally, Heyer has worked to secure corporate partnerships that enable Dream Foundation to fulfill the dreams of thousands of terminally-ill adults each year, including partnerships with Genentech, the Amedisys Foundation, and Southwest Airlines, to name a few. Heyer is trained as a CPA with nearly ten years of experience in international fixed income operations and management

Terry Tempkin is an ARNP who worked with Huntington's families for 19 years at the UC Davis HD Canter, helping patients and families through their HD/JHD journey. Terry has retired from UC Davis, but she hasn't retired from HD! She works tirelessly as a volunteer to help educate people about the disease. She is a medical advisor for Help 4 HD International and also sits on the Executive Board of Directors. Today, Terry will share some of the most common issues she's encountered in her work with HD as well as approaches for dealing with those issues. She also has information to share about Help 4 HD's upcoming HIPE (Highly Interactive Participant Education) Day in Kirkland, Washington, this Saturday, April 22.

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’s executive committee. He has also served as a member of HDSA’s Board of Trustees and is the director of the HDSA Center of Excellence at Beth Israel Deaconess Medical Center. Dr. Frank is the inpatient neurology consultant for the specialized Huntington’s Disease service at Tewksbury Hospital. Dr. Frank was the principal investigator for First-HD, a Phase 3 clinical trial investigating deuterated tetrabenazine as a possible treatment for chorea associated with HD. Last week, the FDA approved the new drug based on positive results from the First-HD trial, which was led by the Huntington Study Group (HSG) on behalf of

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 Huntington Study Group facilitates high-quality clinical research trials and studies in Huntington’s disease; but that isn’t all they do! Today we will be discussing what HSG is, a few programs they have coming up and what to look forward to for HSG 2017. During this update we will get to hear from Ann about her and her husband David’s involvement with HSG. To get more info about current Huntington’s disease clinical research and trials, please go to www.huntingtonstudygroup.org . If you have any questions prior to the show,feel free to email Katrina: [email protected] http://huntingtonstudygroup.org/i-am-the-d

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 disease. Jason does an annual hike to raise funds for HDSA. When we say hike, we are talking about him covering over 3,100 miles of mountain land! He is an inspiration, and we are very much looking forward to this interview. 

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 the Director of Neurorehabilitation at the EvergreenHealth MS Center, EvergreenHealth Neuroscience Institute in Kirkland, Washington.  His clinical emphasis is on maximizing function and mobility for patients with MS. Often, MS patients have considerable disability, and management involves a team approach.  It is the physician who leads the team, orders medications, and marshals the rehabilitation and referral services, counseling, equipment provision, and exercise prescription for the patient. Dr. Brown’s research interests are in clinical trials and rehabilitation interventions for MS.  He has had numerous research

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 disease is one of several diseases that CVC supports. The resources they provide include financial grants to alleviate the burden of medication copayments and health insurance premiums, health insurance counseling, assistance in applying for disability, a patient education program, a prescription discount card, and referrals to other resources. Heather is going to tell us more about the services they offer and will also be available to answer questions from the community! Visit their web site at www.caringvoice.org for a wealth or information or to apply for help, or call them at their toll-free number, (888) 267-1440

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 conversation by calling in or by posting questions and comments in the chat room. We'll also give you the latest information about camps for youth whose lives are impacted by HD and about the upcoming Neuro Film Festival. Links for that information are here: HDYO's North American HD Youth Camp 2017: http://en.hdyo.org/eve/events/524 NYA Youth Retreats 2017: http://nya.hdsa.org/nya-day-retreats Neuro Film Festival: http://patients.aan.com/go/about/neurofilmfestival

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 worked with people who have HD and their families since October 1999.  Dr. Hennig provides counseling to people at-risk, people affected by HD and their family members including pre-symptomatic testing, crisis intervention, supportive counseling, couple and family therapy, continuing care needs, entitlements and benefits.  She initiated and co-facilitates an ongoing, monthly caregiver’s support group and provides in-services to health care professionals inConnecticut.  She has created a state-wide HD symposium which has been offered free to the public for five consecutive years. Dr. Hennig is nationally and internat

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 shoulders. For the most part, I did not talk about it much in those 20 years as I didn't want people to pity me or treat me differently. When I finally decided I was going to go through with it and get tested, I decided to open up more about it to friends and coworkers, and what I found was that my story was not met with pity but that it in fact seemed to inspire people. So perhaps by sharing my story, I could do just that if I wrote about it. "I would say about 90 percent of 'Look Up' is based on my own experience. I go to Vegas with friends every March, have for about seven years, and I take that time to reflect on my

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 Up," which will be published in three installments in The Huntington's Post. Brent is a talented writer, and we look forward to hearing more about his journey and his story during this interview. To read the story, please go to http://help4hd.org/the-huntingtons-post/. Please note: the story includes some adult situations and profanity.

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 illness in the books.Oh, and #HuntingtonsDisease." Tune in Wednesday, Jan. 11, at 4 p.m. Eastern/1 p.m. Central to hear this amazing young woman talk about her journey with Huntington's disease and her wonderful, honest, heartfelt, touching, inspirational blog, "Capturing the Corners."

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 had Kinser on their morning talk show to speak about JHD.  When Kinser lost her daughter and her husband within just a couple of months of each other, she decided it was time to work on starting a nonprofit business in memory of her daughter, “Meg's Fight 4 a Cure, Juvenile Huntington's Disease Foundation, Inc.” Kinser says, “I was appalled at the lack of medical services and places available for children/teens her age that had illnesses that the medical community couldn't handle. Especially JHD. I wanted to raise money for researchers to continue working on medicines and hopefully a cure for this horrible disease

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 her family live with and pass away from HD and speaks passionately about the importance of HD youth programs and advocating for the HD Parity Act.

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 of years and was instrumental in developing HDSA's law enforcement education program and has conducted several trainings for law enforcement agencies. She helps take care of her dad, who suffers from HD, and faced the ultimate and very personal challenge of whether or not to undergo genetic testing to determine her own HD status. Most recently, Lauren was interviewed by CNN for a series that will air in the spring.