Episodes
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If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw
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Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at [email protected]
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. -
Episodes manquant?
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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)
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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
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End of Life: The Caregiver Perspective, Part 2
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For more information about the UF Fixel Institute located in Gainesville, FL, please click here.
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HDYO Ambassador: Molly
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To read the blog post BJ Viau wrote, please click here
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HDYO Ambassador Gemma
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"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.
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End of Life: The Caregiver Perspective
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We are Stronger Together
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Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.
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Please visit hdgenetics.com for more information.
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HD Uncut with Gina
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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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Recap of my visit with UniQure for HD Awareness Month
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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 [email protected], and she will connect you. - Montre plus
