Help 4 HD Live!

Help4HD
  • 5.0 (11)
  • HEALTH & FITNESS
  • UPDATED BIWEEKLY
Help 4 HD Live!

Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation.

  1. 14 HR. AGO

    HD Uncut: Right to Choose with Lauren Holder

    If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw

    17 min

  2. OCT 24

    Rare Patient Voice with Wes Michael

    Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.

    34 min

  3. OCT 17

    Breaking Down Barriers: A Conversation Around Access with HDYO

    Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foundation, Neurocrine Biosciences and PTC Therapeutics.

    1h 16m

  4. OCT 10

    Our Lived Experience (Panel from Help 4 HD Symposium)

    Our Lived Experience (Panel from Help 4 HD Symposium)

    32 min

  5. OCT 3

    Are You Prepared for a Disaster?

    Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters:  Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key to your home.  Prepare for evacuation Make sure your home's exits are wheelchair accessible, and practice emergency evacuation drills with your family and personal care attendant. Also, plan for accessible transportation in case you need to evacuate or get around during or after a disaster.  Prepare an emergency kit Include items to meet your individual needs, such as extra batteries for your wheelchair, medications, and a medical alert system. If you are deaf or hard of hearing, you can include a weather radio with text display, extra hearing aid batteries, and a TTY. If you are blind or have low vision, you can include Braille labels or large print on your emergency supplies.  Register with your local emergency management office Many cities and counties have voluntary registries for people with disabilities.  Know your capabilities Consider what you will be able to do for yourself and what assistance you may need.  Prepare for different hazards Think about how to prepare for different hazards that could impact your community, and what your alternative shelter will be.

    35 min

  6. SEP 19

    HD Uncut: Thoughts from Strasbourg

    HD Uncut: Thoughts from Strasbourg

    29 min

  7. SEP 5

    End of Life: The Caregiver Perspective, Part 2

    End of Life: The Caregiver Perspective, Part 2

    42 min

  8. AUG 29

    UF Fixel Institute for HD Patients with Dr. Nick McFarland

    For more information about the UF Fixel Institute located in Gainesville, FL, please click here.

    24 min
See All (301)

Ratings & Reviews

5
out of 5
11 Ratings

About

Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation.

Information

  • Creator
    Help4HD
  • Years Active
    2011 - 2024
  • Episodes
    301
  • Rating
    Clean
  • Copyright
    © Copyright Katie Jackson (C/O Blogtalkradio)
  • Show Website
    Help 4 HD Live!

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