Help 4 Hd Live!

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 [email protected] or calling their Helpline at 800-345-4372

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 gif

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 [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

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

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.

HDYO Ambassador: Molly

To read the blog post BJ Viau wrote, please click here

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

We are Stronger Together