Podcasts about juvenile huntington's disease

National Suicide Prevention Week: https://afsp.org/campaigns/national-suicide-prevention-week-2019/ Resources: https://afsp.org/find-support/resources/ Suicide Prevention Awareness Month: https://www.nami.org/get-involved/awareness-events/suicide-prevention-awareness-month

Debbi Fox-Davis has enjoyed a 23-year career leading and developing resources for nonprofits in North Carolina. Her career accomplishments include being the first Executive Director for Dress for Success of the Triangle; raising funding and engaging community supporters to ensure all children have permanent, safe and loving families for the Children’s Home Society of NC; raising scholarship and research funds for NC State University and running NC State’s Institute for Nonprofits online journal for nonprofit management. Debbi has also served as the Assistant Director for Development at Habitat for Humanity of Wake County and as the Director of Development and Marketing for the North Carolina Theatre. Debbi received her MBA from the Middlebury Institute of International Studies in Monterey, CA and has worked in Taiwan and studied in China. She received her Bachelors of Arts in History from George Mason University (Fairfax, VA). After growing up in the Washington, DC suburbs and moving around a lot for college, internships and jobs, Debbi took up residence in Raleigh 24 years ago. Soon after she arrived in Raleigh, she met her future husband and Raleigh has been home ever since. Debbi and her husband, John, have two sons, Spencer (19) and Max (17), a dog, Hobbes and acat, Pippi. She serves on the Board of Wheels for Hope and is an active volunteer with the Dorothea Dix Park. She enjoys running, reading, travelling, cooking and eating.

Gwen has worked at the Good Samaritan Society’s University Specialty Center for the past 39 years. She is the nurse manager of the Huntington’s Unit. Gwen has been an advocate of HD for 23 years, helping residents and their families to navigate through issues surrounding long term care placement, supporting and educating staff on HD specialty care. Attends the HDYO North American camp as volunteer and is one of the camp nurse’s. Gwen also has served as a panel expert for the HDYO.org website. Has served on the board of HDSA Minnesota Chapter. Was a frequent speaker for Lundbeck Pharmaceutical doing webinars and on sight educations throughout the US about caring for people HD and Tetrabenazine. In the past has presented at the HDSA National conventions. In her spare time is interested in Reiki, Healing Touch, Aromatherapy and Feng Shui and yoga.

Please join us as Ignacio talks about his organization Factor-H and how he is helping the HD community. https://factor-h.org/ To donate, please visit: https://help4hd.org/project-abrazos/ Also, for more information about "Dancing at the Vatican", please visit the following link

Debbie Pausig, LMFT, CT, is a Licensed Marriage and Family Therapist, a Certified Thanatologist, Professional Support Group Leader for HDSA CT-Chapter. Hospice Bereavement Coordinator for VNA Community Healthcare & Hospice. She is a National Speaker and Author of “An Affai? Worth Remembering With Huntington’s Disease, Incurable Love & Intimacy During an Incurable Illness.” She is the HDSA-CT Chapter Family Services Committee Chair and Education Committee Member. Debbie uses humor and compassion drawn from 25 years of experience in Law Enforcement and 17 years as her late husband with HD’s caregiver into her profession as a therapist and presenter. Contact info: · Debbie Pausig @203-985-8246, or debbiepausig.mft@gmail.com, debbiepausigmft.com Support groups in North Haven and Norwich, CT LMFT · Mary Dunlevy @ 203-216-6266, mdunleavy@operationhopect.org Support group in Fairfield,CT MSW *Hartford Healthcare Chase Family Movement Disorders Center, Vernon, CT and their Medical Director, Dr. de Marcaida 860-870-6380 https://hartfordhealthcare.org/services/movement-disorders-center *Also, UCONN Health Huntington’s Disease Program 860-679-6700, Farmington, CT Genetic Counseling is cited on their website (The testing used to be anonymous) https://health.uconn.edu/psychiatry/huntingtons-disease-program/ *Currently, Fresh River Healthcare in East Windsor, CT is the first skilled nursing facility to partner with the UCONN Health Huntington’s Disease Program. 860-623-9846 Program Director is Rulanda Simao  Freshriverhealthcare.com *We also have VNA Community Healthcare & Hospice, Guilford, CT that provides homecare, palliative & hospice homecare for HD patients. Hospice Director is Susan Sokol 203-458-4200  Connecticuthomecare.org

Dr. Bird is a clinical neurogeneticist with interests in a wide range of hereditary disorders of the nervous system. In 1974, Dr. Thomas Bird founded the first clinic for adults with neurogenetic diseases in the United States. For more than 40 years, he directed this clinic at the University of Washington where he saw thousands of patients and conducted pioneering research on conditions such as cerebellar ataxia, movement disorders, hereditary neuropathy, muscular dystrophies, and familial dementias. Over his career, he has been honored with numerous national awards and lauded for his discoveries about the genetics of hereditary neurological disorders including Alzheimer and Huntington diseases. Although retired from clinical practice, Dr. Bird still actively researches genetic diseases of the brain and neuromuscular system; collaborates with molecular biologists and others on genetics projects; and mentors physicians in training and research fellows. He earned his M.D. from Cornell Medical College and is board certified by the American Board of Psychiatry and Neurology. He lives in Lake Forest Park, WA, just outside Seattle, with his wife Ros.

Shana (Martin) Verstegen has many things to be proud of, but her work with the Huntington’s disease Society of America in honor of her mother will always top that list. Shana’s mother passed away from Huntington’s Disease in March of 2013. After growing up watching Debby Martin lose her ability to move independently, Shana strived to live every day to the fullest with a focus on movement – from being the first female pole vaulter at the University of Wisconsin, to winning 6 lumberjack world championship titles. Shana’s professional life involves traveling the country in the fitness industry as a Master Instructor for TRX Training and the American Council on Exercise, personal training, and teaching group exercise. Of course her heart is with fundraising and raising awareness toward finding a cure for Huntington’s Disease. She recently tested negative but will never give up the fight.

Gene Veritas – whose real name is Kenneth P. Serbin – has been active in the Huntington’s disease community since his mother’s diagnosis with the disease in 1995. She died of HD in 2006 after a 20-year fight. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative in the womb and is today a healthy 18-year-old college student. Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). He adopted the pseudonym “Gene Veritas” in January 2005, when he started the blog “At Risk for Huntington’s Disease” (www.curehd.blogspot.com). He has posted 270 articles on numerous aspects of HD, its social impact, and the quest for treatments. In 2007, he helped initiate the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, Serbin came out about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. That year he was also named the HDSA Person of the Year. In 2012, he went fully public, publishing the essay “Racing Against the Genetic Clock” in The Chronicle of Higher Education. In 2017, Serbin, his wife Regina, and daughter Bianca participated with HD families from around the world in #HDdennomore, Pope Francis’ special audience with the HD community at the Vatican in Rome. A scholar of Brazilian history, Serbin has also collaborated with advocates for the Associação Brasil Huntington (Brazilian Huntington’s Association). Serbin is a professor in the Department of History at the University of San Diego.

Phil’s Kids was set up in memory of Dr Phil, who sadly passed away from Huntington’s Disease (HD) in 2014. Whenever Dr Phil lost a patient he would immediately go and look at the new-born babies. He did this, he said, because it reminded him of the circle of life, of life continuing, of new hope and who knew what amazing feats these new humans might achieve. It was because of his belief in future generations, the possibilities of medical science and his great love of children that we decided to start Phil’s Kids. Stopping the passing of the gene is the only way to reduce the numbers of those with HD. Phil’s Kids aims to assist people to do just that. By offering financial support, information, advice and peer support for PGD-IVF we hope to be able to help the HD community to stop this horrendous disease in its tracks. The charity wants this generation within a family to be the last generation in that family to have HD, ever. 

Tuhin Virmani received a combined M.D./Ph.D. at UT Southwestern Medical School in Dallas, Texas. His doctoral thesis explored the physiologic mechanisms of synaptic chemical neurotransmission. After neurology residency at Washington University in St. Louis, Missouri, he completed a clinical-research fellowship in movement disorders at Columbia University in New York. At Columbia he became interested in studying the causes of freezing of gait in Parkinson disease and he completed a clinicopathologic study under the mentorship of Drs. Stanley Fahn and Jean-Paul Vonsattel. Dr. Virmani has continued to focus his research on gait in neurodegenerative disorders since joining the University of Arkansas for Medical Sciences in 2013, where he is co-director of the Movement Disorders program. He runs a state-of-the-art Gait Lab with the goal of developing predictive algorithms for pre-symptomatic detection gait impairment that would allow development and testing of therapeutic options for patients with these debilitating diseases

To view the original show page, please visit http://www.blogtalkradio.com/help4hd/2016/05/18/dr-nancy-wexler-on-help4hd-live "We are so honored and priviledged to have Dr. Nancy Wexler on Help4HD Live! The "Blond Angel" the "Gene Hunter" as she is so endeard by her subjects, has devoted her life and career as a Geneticist to finding a cure for Huntington's disease which took her mother and many other family members. Find her video interview on One on 1 Profile: Geneticist Dr. Nancy Wexler Leads the Fight Against one of the World's Most Dreaded Hereditary Diseases. Tune in for this momentous interview... Find more informaton about Dr. Nancy Wexler, President of the Hereditary Disease Foundation at http://hdfoundation.org/."

HDYO has a new Genetic Testing program! Please visit their website for more information: www.hdyo.org Matt Ellison's bio: "Hi! My role at HDYO includes developing all the educational project work we do for our website, including video projects, overseeing the youth camps and events HDYO hosts globally, planning future global projects to expand our reach, keeping the website up-to-date, responding to any messages we are sent for support/advice/questions and coordinating our volunteer translation team. I am the founder of HDYO and come from a HD family. I started working voluntarily on the idea of HDYO in 2010 and it launched in 2012, I have been a staff person since 2013. I also have a degree in Childhood and Youth Studies. I am fortunate to work on something that is a passion for me."

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.

Caring for a child with Juvenile Huntington's Disease has a unique set of challenges. From dealing with school officials, IEPs, doctors that aren't familiar with their child's symptoms. Chloe and Misty are going to join our host, Katie Jackson and discuss the daily trials and tribulations of their lives. 

Gary Barg, founder and CEO to Today's Caregiver, caregiver.com, and Fearless Caregiver, began his journey in 1995, after returning home to help his mother care for his elderly grandparents. Overwhelmed by everything this entailed--finding a care home, dealing with insurance, etc.--he decided there needed to be one single source of information, advice, and support for caregivers. Gary founded the magazine Today's Caregiver and the online site caregiver.com to be that source. He also began hosting Fearless Caregiver conferences around the country and introduced a free online newsletter for caregivers. Today, Gary will share with us the many resources that Today's Caregiver and caregiver.com have to offer, as well as how to access those resources. The photos in this show's carousel, taken from the caregiver.com website, will give you a glimpse of the resources that are available.

Cindy Moore is Erin's mom. Cindy has walked every step, alongside her daughter and the struggles that go along with Juvenile Huntington's Disease. Cindy lives in Canada and is also the President of We Have A Face - Canada. This past weekend Cindy and her team raised over $4,000 that will all be donated to UC Davis to help fund their JHD research! Tune-in Wednesday August 30, 2017 at 1PM PST to hear more about Cindy, Erin and We Have A Face!

Neer Ziskind is the CEO and co-founder, along with geneticist Dr.Yael Wilnai, of GeneFo. GeneFo was created as a solution to patients and medical experts wishing to connect and enrich their understanding of their condition, how to better manage it, and get the most up-to-date information on new treatments and clinical trials. Neer will share with us how GeneFo works and why you should set up a GeneFo account. Registration is FREE, and once you set up an account, you will have access to all the resources featured on the website. The mobile app, available on iTures, is described thus: "Simply choose your condition, and start comparing your symptoms or medication to other patients like you, and see if they have more efficient treatments and drugs! You will also get complete and free access to: A physician's directory (doctors, researchers, hospitals) that patients are rating, so you know who are the best practitioners in your areaMedical advice: No more scrolling through PubMed or WebMd- Simply ask your questions, and experts in your condition will answer, and provide online lectures and videosShare with your peers: in addition to experts, fellow patients and caregivers will offer invaluable support and adviceManage your health information: Track your symptoms, treatments and well being over time, so you get a report with trends and recommendation about more efficient treatments. Share it with your doctor to improve your care!Clinical trials matching: Get access to the most innovative treatments years before they are commercially available, by getting matched to FDA approved trials in your area."

Ginnievive Patch is the pseudonym used by the author of Help 4 HD's new book, I Fight for Understanding. Ginnievive is both a nurse and a caregiver extraordinaire who has many insightful tips for caregivers. She is a caregiver to her ex-husband, her mother-in-law, and two of her sons, all of whom have Huntington's disease. Her passion is to educate caregivers and help them survive the turmoil HD/JHD can cause in the early stages, primarily if the psychiatric symptoms outweigh the physical symptoms. She and her ex-husband remain close, making memories. Her motto is, "If I can help one family avoid being shredded apart, then I have accomplished my goal." HD/JHD is a wild roller coaster, and her goal is to make the ride smoother for others. I Fight for Understanding is available for purchase from the CreateSpace eStore (https://www.createspace.com/7113258) and on Amazon and Kindle. All net proceeds from the book go to Help 4 HD International's Family Relief Fund.

#WeHaveAFace travels to California - editing "The Warriors" the Juvenile Huntington's Disease documentary.

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. Office hours are Monday-Friday, 9:00 a.m.-6:00 p.m.

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

#WeHaveAVoice LIVE Radio! Tonight: Let’s Talk About Cannabis Oils – Cindy Moore and Traci Pratt discuss their children's experiences using cannabis oils for Juvenile Huntington's Disease.

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.

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.  A group of my friends, who are now Board members of my business, began working on a fundraiser to raise these funds to send out to UC Davis in California. The fundraiser was held in September 2016, raising more than $20,000.” Kinser is a board member of her local Massachusetts HDSA Chapter. She is involved in attending meetings quarterly and helping with the HD walks around the state, Education Days, as well as many other events that the chapter sponsors.  Kinser recently took Meaghan’s service dog, Dixie, and finished putting her through a pediatric training therapy class. Dixie passed the test so that she is now an official K-9s for Kids therapy dog.

#WeHaveAFVoice - Tonight's LIVE show will discuss "Behavior with Huntington's and Juvenile Huntington's Disease" with our great panel of guests! Tonight's topics: Aggression, Anxiety, and Altered Sexuality with HD and JHD!

Tonight is a quick follow up show from our amazing trip to Brockville, Ontario Canada! "No Time To Spare" 3rd Annual Bowling Tournament for Juvenile Huntington's Disease, honoring Erin Wade!

LIVE from Brockville, Ontario Canada!Tonight we celebrate the 1st Canadian walk for Juvenile Huntington's Disease! We are LIVE with Cindy Moore, Erin Moore, Dr. Kyle Fink, and Dr. Jan Nolta! Fundraiser Show! #YouAreLoved

Deena is a wife and mother of three beautiful children. Her husband was diagnosed with HD two years ago and is now in the mid stages of the disease. Most recently, her youngest child was diagnosed with childhood-onset JHD at age 4. Her other 2 kids remain at risk for the disease. Deena lives in Florida, where she enjoys spending time with her kids, cooking, reading, and advocating for the HD community, with an emphasis on JHD awareness. Stacey Sargent is a wife and mother of two incredible children. Stacey is an RN and resides in Georgia. Stacey recently lost her son, Cory Sargent, to JHD. Cory had a smile that could light up a room. His mother is an amazing woman who is still a strong advocate for families that are living with JHD.

May is HD/JHD Awareness Month! Tonight our special guests will talk about their loved ones with Juvenile Huntington's Disease. ‪We are so blessed to have Dr. Kyle Fink, CM Moore, Alison Believingforacure Nye, Jan Todd, and Dr. Herwig Lang join us for a special Juvenile Huntington's Disease Radio Show! Please visit: http://www.spreaker.com/user/wehaveaface

Tune in to hear Dr. Kyle Fink and Dr. Peg Nolpoulos give us a overview and answer questions about their presentations they recently gave at Help 4 HD International Symposium, Sacramento. https://vimeo.com/166162213 https://vimeo.com/166162226 https://vimeo.com/166162235 https://vimeo.com/166220289

LIVE from: "No Time To Spare!" WeHaveAVoice - 1st Community Bowling Tournament for Huntington's and Juvenile Huntington's Disease! Orange Bowl Lanes in Kissimmee, Florida! Engaging the Huntington's disease community is part of our mission!

TUESDAY, MARCH 17, 2015 3:30 pm PST/5:30 pm CST Tonight our incredible special guests are Dr. Peg Nopoulos, Sonia Slevinski and Jane Kerr from the University of Iowa.  We will be talking about the clinical study called Kids-HD/Kids-JHD.  This study is sponsored by CHDI and is an ongoing study to help determine what is the best care protocol for the care and assessment of JHD children.  Tune in and bring your questions. Call into the show on these two numbers: 310-982-4227 or 877-497-4103. Talk to you soon! For more informationn about Kids-HD/Kids- JHD visit their website: http://kids-hd.psychiatry.uiowa.edu/faqs