Help 4 HD Live!

March is Women's History Month, and our HD community has so many women who are truly badasses - from leadership in our Patient Advocacy Organizations to the JHD moms and caregivers to the people with HD who fight every single day. I wanted to take a moment to acknowledge that. :) Erika Boulavsky of HD Reach and I not only take some time to honor the badass women of the HD community. We also talk a...

You can find the Fundación Familia Huntington Costa Rica on Facebook and Instagram

I'm attending and speaking at the HDYO Congress Event in Prague! Take a listen!

If you would like to learn more about how to get involved, please email me at lauren@help4hd.org

Rare Disease Day is Feb 28, 2025.  Please visit NORD's website for information and resources for their #ShowYourStripes campaign. They have a social media toolkit, as well as playbooks with step-by-step guides on how to raise awareness for Rare Disease Day. Another great organization with resources is Global Genes . You can participate in their #ZebraTales and #CareAboutRare campaigns.   

Jimmy Pollard joined me to talk about HD Gratitude Day on 3/23/2025.  Recognizing Huntington’s Gratitude Day What? A social media event recognizing the unique partnership between families and scientists working together towards an effective treatment, or “cure,” for HD on March 23rd, the anniversary of the discovery of the gene. It spotlights the contributions to that milestone achievement of impo...

This panel discussion occurred at the 2025 Southeast HD Symposium in Nashville, TN. The panelists included Maryann Emerick of HDSA, Jamie Holloway of Help 4 HD, Jenna Heilman of HDYO, and Erika Boulavsky of HD Reach. Author and advocate Christy Dearien facilitated the discussion. You can also watch this on Lauren's YouTube channel - Dying To Live .

This is an HD Uncut series episode with my husband, Josh Holder. I interview him for the 1st time in our 20-year marriage.

Hannah joins me to share her story about being a young caregiver and becoming an HDYO Ambassador.

Amy Ogilvie joins Lauren to discuss her HD journey and how it has led her to do research in HD.

Jamie Holloway joined me to talk about intimacy and share relationship resources. Webinar with Dr. Karen Anderson and Erika Boulavsky of HD Reach: Sex and Intimacy within the Huntington's Disease Journey Huntington's Disease Youth Organization - Relationships   Relationships - NYA  Huntington's Disease Youth Organization - Talking About HD with Family and Friends   Huntington's Disease Youth Organ...

Help 4 HD Updates for 2025 with Katie Jackson

Emma Wajswasser is a 12-year-old student from Toronto whose grandpa is living with HD. She wrote this book because she wanted to educate kids and adults about the disease and how to interact with people in a kind and compassionate way. This is not just a book about Huntington’s disease; it is about having empathy and understanding for any older adults in our lives. The book is published by Lemonad...

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 thi...

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...

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 f...

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...

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 Foun...

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 t...

HD Uncut: Thoughts from Strasbourg

End of Life: The Caregiver Perspective, Part 2