Podcasts about hd jhd

Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group

Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group

Terry Tempkin, NP-C, MSN, is an Adult Nurse Practitioner who spent 18 years working with Huntington’s disease families at the University of California Davis Health System. During her time there, she worked with the HD team to build one of the largest HD programs in the country, noted for their expertise in HD/JHD care. She participated in over 18 clinical trials in Huntington’s disease.   Although she retired from the Health System in 2016, she did not retire from the passion to care for families coping with HD.

Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHD

Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHD

Founder of WeHaveAFace.org, James Valvano Addresses HD/JHD Community about 2019.

Founder of WeHaveAFace.org, James Valvano Addresses HD/JHD Community about 2019.

Terry has spent 18 years working at the University of California Davis HDSA Center of Excellence. During her time there, she worked with the HD team to build one of the largest HD programs in the country, noted for their expertise in HD/JHD. She has participated in 18 clinical trials targeting new treatments for HD. Although she retired from the health system in 2016, she did not retire from her passion to care for families coping with HD/JHD. Terry is currently an Executive Board Member for Help 4 HD International, and consults with the HDSA Center of Excellence program.

Join us and our guest Ezra Parzybo, Cannabis Consultant and author of "Cannabis Consulting; Helping Patients, Parents, and Practitioners Understand Medical Marijuana" available from UPNE Spring, 2018. Ezra will be joining us to discuss his work in the cannabis community and the benefits that he has seen for those suffering from diseases such as HD and JHD. 

Join us as Help 4 HD's executive team and volunteers share how they will navigate through the holiday season. As a follow up from last week's radio show with Dr. Bonnie Hennig-Trestman, the team members will share their current and past experiences as a families affected by HD/JHD. The holidays can be stressful without an illness, but when you add HD or JHD it can increase the stress. Please listen in as the team discusses some of the stresses many HD/JHD families experience and how they will be celebrating this year. 

Sean W. Scott will join our host, Katie Jackson to discuss elder law and end-of-life care. Many HD/JHD families haven’t even thought of end-of-life care and the type of things they should have in place and may not know where to begin. Oftentimes, people at risk for HD are scared to get tested because they are afraid of being denied coverage and benefits based on their results. These conversations are subjects that can be very difficult to think about and initiate with loved ones. Katie will be talking to Sean about these subject and others that may affect HD/JHD families.

Heather Hare, Director of Communications and Outreach with the Huntington Study Group is joining us to discuss the mission of HSG and their important contributions to the HD/JHD community, including their Annual Event that will take place in Denver, Colorado on November 2nd-4th, 2017. Please join us to learn about HSG. 

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.

May is HD/JHD Awareness Month! Listen to this LIVE update and stay connected!

May is HD/JHD Awareness Month! Listen to this LIVE update and stay connected!

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.

Today Dr. Herwig Lange of the George Huntington Institute will be answering questions about dental care and HD/JHD. We thank Dr. Lange for his ongoing support!

Today Dr. Herwig Lange of the George Huntington Institute will be answering questions about dental care and HD/JHD. We thank Dr. Lange for his ongoing support!

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.

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.

On Thursday, October 6th, we will have another LIVE Broadcast regarding HD/JHD events within the community! Stay tuned...we will be discussing events here in the USA, and in England! #YouAreLoved

On Thursday, October 6th, we will have another LIVE Broadcast regarding HD/JHD events within the community! Stay tuned...we will be discussing events here in the USA, and in England! #YouAreLoved

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 carries out due to Annie MacKenzie having the opportunity to meet the FM had two event for cares of various conditions. Most SNP (Scottish nationalist political party) have at one stage support the be hd aware campaign. Including snp city of Glasgow councillors and west Lothian councillors the main aims:  •    Raise awareness for Huntington's Disease/ Juvenile Huntington's Disease •    The impact HD/JHD can have on the whole family, •    Help to improve care/ support for HD families throughout Scotland, through the means of hosting a variety of event's throughout Scotland.  main points: •    The importance of raising awareness for JHD/ HD within the community reduces stress for the person affected by JHD/ HD and his /her family. •    Awareness prevents the JHD/HD affected member of the family being accused of being drunk, the person with JHD /HD stops going out •    Awareness within the care system can helps put trained support / care in place before the family are emotionally stressed and unable to cope Events held to date: •    16 live music events in various counties throughout Scotland •    7 youth football events •    Talks with professionals We are the first registered Scottish charity ran by HD family members.

WeHaveAFace.org Global HUBS - Awareness events for Huntingotn's and Juvenile Huntington's disease! Today we are updating the community regarding some wonderful events we have scheduled for August and October 2016! For additional information: www.WeHaveAFace.org/Events

WeHaveAFace.org Global HUBS - Awareness events for Huntingotn's and Juvenile Huntington's disease! Today we are updating the community regarding some wonderful events we have scheduled for August and October 2016! For additional information: www.WeHaveAFace.org/Events

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

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