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محتوای ارائه شده توسط Help4HD. تمام محتوای پادکست شامل قسمتها، گرافیکها و توضیحات پادکست مستقیماً توسط Help4HD یا شریک پلتفرم پادکست آنها آپلود و ارائه میشوند. اگر فکر میکنید شخصی بدون اجازه شما از اثر دارای حق نسخهبرداری شما استفاده میکند، میتوانید روندی که در اینجا شرح داده شده است را دنبال کنید.https://fa.player.fm/legal
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Curated Questions: Conversations Celebrating the Power of Questions!
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Episode Notes [03:47] Seth's Early Understanding of Questions [04:33] The Power of Questions [05:25] Building Relationships Through Questions [06:41] This is Strategy: Focus on Questions [10:21] Gamifying Questions [11:34] Conversations as Infinite Games [15:32] Creating Tension with Questions [20:46] Effective Questioning Techniques [23:21] Empathy and Engagement [34:33] Strategy and Culture [35:22] Microsoft's Transformation [36:00] Global Perspectives on Questions [39:39] Caring in a Challenging World Resources Mentioned The Dip by Seth Godin Linchpin by Seth Godin Purple Cow by Seth Godin Tribes by Seth Godin This Is Marketing by Seth Godin The Carbon Almanac This is Strategy by Seth Godin Seth's Blog What Does it Sound Like When You Change Your Mind? by Seth Godin Value Creation Masterclass by Seth Godin on Udemy The Strategy Deck by Seth Godin Taylor Swift Jimmy Smith Jimmy Smith Curated Questions Episode Supercuts Priya Parker Techstars Satya Nadella Microsoft Steve Ballmer Acumen Jerry Colonna Unleashing the Idea Virus by Seth Godin Tim Ferriss podcast with Seth Godin Seth Godin website Beauty Pill Producer Ben Ford Questions Asked When did you first understand the power of questions? What do you do to get under the layer to really get down to those lower levels? Is it just follow-up questions, mindset, worldview, and how that works for you? How'd you get this job anyway? What are things like around here? What did your boss do before they were your boss? Wow did you end up with this job? Why are questions such a big part of This is Strategy? If you had to charge ten times as much as you charge now, what would you do differently? If it had to be free, what would you do differently? Who's it for, and what's it for? What is the change we seek to make? How did you choose the questions for The Strategy Deck? How big is our circle of us? How many people do I care about? Is the change we're making contagious? Are there other ways to gamify the use of questions? Any other thoughts on how questions might be gamified? How do we play games with other people where we're aware of what it would be for them to win and for us to win? What is it that you're challenged by? What is it that you want to share? What is it that you're afraid of? If there isn't a change, then why are we wasting our time? Can you define tension? What kind of haircut do you want? How long has it been since your last haircut? How might one think about intentionally creating that question? What factors should someone think about as they use questions to create tension? How was school today? What is the kind of interaction I'm hoping for over time? How do I ask a different sort of question that over time will be answered with how was school today? Were there any easy questions on your math homework? Did anything good happen at school today? What tension am I here to create? What wrong questions continue to be asked? What temperature is it outside? When the person you could have been meets the person you are becoming, is it going to be a cause for celebration or heartbreak? What are the questions we're going to ask each other? What was life like at the dinner table when you were growing up? What are we really trying to accomplish? How do you have this cogent two sentence explanation of what you do? How many clicks can we get per visit? What would happen if there was a webpage that was designed to get you to leave? What were the questions that were being asked by people in authority at Yahoo in 1999? How did the stock do today? Is anything broken? What can you do today that will make the stock go up tomorrow? What are risks worth taking? What are we doing that might not work but that supports our mission? What was the last thing you did that didn't work, and what did we learn from it? What have we done to so delight our core customers that they're telling other people? How has your international circle informed your life of questions? What do I believe that other people don't believe? What do I see that other people don't see? What do I take for granted that other people don't take for granted? What would blank do? What would Bob do? What would Jill do? What would Susan do? What happened to them? What system are they in that made them decide that that was the right thing to do? And then how do we change the system? How given the state of the world, do you manage to continue to care as much as you do? Do you walk to school or take your lunch? If you all can only care if things are going well, then what does that mean about caring? Should I have spent the last 50 years curled up in a ball? How do we go to the foundation and create community action?…
Help 4 HD Live!
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محتوای ارائه شده توسط Help4HD. تمام محتوای پادکست شامل قسمتها، گرافیکها و توضیحات پادکست مستقیماً توسط Help4HD یا شریک پلتفرم پادکست آنها آپلود و ارائه میشوند. اگر فکر میکنید شخصی بدون اجازه شما از اثر دارای حق نسخهبرداری شما استفاده میکند، میتوانید روندی که در اینجا شرح داده شده است را دنبال کنید.https://fa.player.fm/legal
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.
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639 قسمت
علامت گذاری همه پخش شده(نشده) ...
Manage series 1076406
محتوای ارائه شده توسط Help4HD. تمام محتوای پادکست شامل قسمتها، گرافیکها و توضیحات پادکست مستقیماً توسط Help4HD یا شریک پلتفرم پادکست آنها آپلود و ارائه میشوند. اگر فکر میکنید شخصی بدون اجازه شما از اثر دارای حق نسخهبرداری شما استفاده میکند، میتوانید روندی که در اینجا شرح داده شده است را دنبال کنید.https://fa.player.fm/legal
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.
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639 قسمت
همه قسمت ها
×Help 4 HD Updates for 2025 with Katie Jackson
Pay What You Can: www.paywhatyoucanpeersupport.com/faqs Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline: If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org They also have a chat option and services for deaf/HoH For other countries, visit this website: www.allianceofhope.org/feeling-suicidal HDSA Telehealth: www.hdsa.org/find-help/community-social-support/hdsa-telehealth/ You can also contact them by emailing HDSAinfo@HDSA.org or calling their Helpline at 800-345-4372…
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Help 4 HD Live!
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1 Hospice For End Of Life Care Explained 1:10:00
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Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com/watch?v=e1CxsZP5f8o…
HD Uncut: Days of Our Lives
The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com. www.hungerfreeamerica.org Full Cart, which is a national food assistance program available to individuals and families who are facing financial hardships and food insecurity. www.fullcart.org. Dysphagia Outreach Project and they have a Dysphagia Food Bank program: www.dysphagiaoutreach.org/apply-for-assistance. www.lasagnalove.org/request www.helpingamericansfindhelp.org/christmas-assistance-help-by-state. Reddit page “Santa’s Little Helpers”. Parents and caregivers can submit requests for toys or other gifts for their children or loved ones and the general population can donate those items directly to you. They also have great suggestions of where else to find gifts for your loved ones and free or very low-cost activities to do with your families instead of gifts. You can find the Reddit page at www.reddit.com/r/SantasLittleHelpers.…
Update about Sage Therapeutics with Lauren Holder
If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw
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.…
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Help 4 HD Live!
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1 Breaking Down Barriers: A Conversation Around Access with HDYO 1:16:00
1:16:00
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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.…
Our Lived Experience (Panel from Help 4 HD Symposium)
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.…
HD Uncut: Thoughts from Strasbourg
End of Life: The Caregiver Perspective, Part 2
For more information about the UF Fixel Institute located in Gainesville, FL, please click here.
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Help 4 HD Live!
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HDYO Ambassador: Molly
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Help 4 HD Live!
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To read the blog post BJ Viau wrote, please click here
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Help 4 HD Live!
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HDYO Ambassador Gemma
"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.
End of Life: The Caregiver Perspective
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Help 4 HD Live!
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We are Stronger Together
Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.
Please visit hdgenetics.com for more information.
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Help 4 HD Live!
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HD Uncut with Gina
As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.
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Help 4 HD Live!
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Recap of my visit with UniQure for HD Awareness Month
Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient groups to improve the drug development process. (Wikipedia)" You can visit their website here: https://c-path.org/ If you are interested in contacting Thom directly, please reach out to Lauren Holder at lauren@help4hd.org, and she will connect you.…
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Help 4 HD Live!
![Help 4 HD Live! podcast artwork](/static/images/64pixel.png)
For more information about the HDYO Ambassadors program, please visit www.hdyo.org.
I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to Live
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Help 4 HD Live!
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1 HD Uncut with Meredith Patterson 1:10:00
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Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159…
Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.…
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