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 [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.

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