All of Help 4 HD's Support Groups and hangouts are private and a supportive environment!

Caregiver Support Group:

Tuesdays at 2 PM PT via Zoom & also a messenger group

Description: This caregiver support group is a collection of caregivers from all different stages who share tips, tricks, and stories in a very supportive environment. This group is for caregivers who are not at-risk or gene-positive. We do, however, have other support groups for these demographics!

JHD Support Group:

Description: This is a messanger group that is a collection of parents and family members caring for someone with JHD. There are also people in this group who have lost their children to JHD and remain in the group as a great system of support. Zooms happen when the group chooses!

Bereavement Support Group:

Description: This group offers a safe and supportive space for HD community members who have lost a loved one to Huntington's Disease. We meet monthy on Zoom, and more frequently, if needed.

Spanish-Speaking Support Group:

Description: This is a messenger group specifically for people who speak spanish that need support. There is also space for Zoom and phone calls. We continue to see the need and do our best to help support all that we can; please join us. You can contact Kasandra directly at Kas@Help4HD.org

Prodromal, Premanifest, Early Manifest (PPEM) Support Group:

First Tuesday of every month at 4 PM PT via Zoom & also a messenger group

Description: This group is for individuals who have tested positive for HD and do not have symptoms, those who are in the early stages, and those who are in between. 

Monday Mixer:

Mondays at 4 PM PT via Zoom & also a messenger group

Description: This is for anyone impacted by HD/JHD and is a ton of fun! Mostly, people check in with each other, share life updates, and hang out. This is a very light-hearted way to connect.

Men's Meet Up

Every other Thursday at 5 PM PT via Zoom & also a messenger groupDescription: Just a bunch of guys hanging out. These caregivers have perspectives that are unique to men and have a safe space to talk about life...but also, to just hang out together. You can email them directly for more information: DJ@Help4HD.org & Bill@Help4HD.org

For more information, or to receive access to these groups, please contact Jamie at Jamie@Help4HD.org

Since 2014, Help 4 HD has had an annual Symposium, and the location changes yearly to include as many people as possible. We partner with HD and JHD specialists from all over the United States to bring our community the best information available. We continued offering this program during the pandemic but needed to temporarily move it to a virtual platform. We went hybrid for 2021 and are excited to be fully in-person again, as of 2022. This year, we will be in Des Moines, Iowa and we cannot wait to see you there!

• Free Event

• Child Care Full of Activities

• 2 Days Full of Support & Education

• JoHD Specific Content

• 2 Evening Receptions Including the Annual Awards Ceremony

• Hundreds of People Impacted by HD/JHD

Help 4 HD International’s informational and training program for EMTs and Firefighters about Huntington’s disease.

Download Brochure 

Download powerpoint

Watch Here

Found on Spreaker, the first international radio show for Huntington’s disease awareness brings science, research, clinical trials, education, and inspiration to its community. Help 4 HD Live! has 200,000+ listeners and 650+ archived episodes. Help keep the first international radio show for Huntington’s disease on the air. If you are interested in being a guest speaker on the show, please email Lauren: Lauren@Help4HD.org

Winner of 19 awards, this documentary tells the stories of children with Juvenile Huntington's disease and their families. There are no treatments and no cure for JHD. It is always fatal. All proceeds from this film go to the JHD research at UC Davis. 

This program designed to promote JHD research and awareness. Our first walk was on June 13, 2015, at McKinley Park in Sacramento, CA, to raise money for Dr. Jan Nolta’s JHD Research Initiative (the first of its kind ever for JHD) at UC Davis. Since that event the community has come together through Help 4 JHD and hosted events across the country. All net proceeds from these events went directly to JHD research.

If you would like to host a event or donate to a Huntington’s disease or a Juvenile Huntington’s disease research please contact us through our contact page. We will help support you throughout the whole process and one hundred percent of the net proceeds from the event will go the HD/JHD researcher of your choice.

Help 4 HD, in partnership with HD Genetics, has created a fund for individuals seeking HD Genetic Counseling and Testing who are facing financial hardship. Please visit www.HDGenetics.com and click on "contact us." You can also reach out to Katie Jackson and Katrina Hamel (Katie@Help4HD.org Katrina@Help4HD.org).

Help 4 HD TV is a weekly Vlog show premiered on YouTube dueing the pandemic. We are now airing weekly on Facebook and also upload to YouTube! We will be talking about resources, giving updates, and peer to peer support shows through this program. Please be sure to follow Help 4 HD International's page on Facebook and find Help 4 HD TV on YouTube, and remember to subscribe to our channel and ring the bell to receive notifications on when new episodes post to YouTube.

Highly Interactive Participant Education (HIPE) Description: Help 4 HD conceived this interactive program in response to the needs of families within the HD community.  Together, caregivers, patients, and medical professionals versed in HD will discuss scenarios that plague families and will, as a group, suggest strategies and tactics for dealing with these issues. This will allow the community, particularly families that have tried other options without much success, to look at possible solutions to common problems.  It will also allow professionals to learn more from the community about the issues we face.  Help 4 HD envisions a group of people with similar but different backgrounds sharing ideas about situations that are often difficult to handle. Caregivers can support others in similar positions, and professionals can support these conversations with added direction and advice.  We see this program as a way of offering to families within the HD community and to medical professionals a “tool kit” for dealing with a wide range of issues.

The Help 4 HD Relief Fund was started to help individuals in the HD/JHD community with emergency support. Many times, our community needs money for medication, food, clothing, and other necessities. When individuals are in limbo with social services or loss of employment and benefits, this fund will give relief to people who are in dire need, as long as there is money in this special account. There are very few organizations that have been willing to help our beloved HD/JHD families with an emergency fund. 

Recognizing the need to educate law enforcement about Huntington’s disease, we launched LEEP in 2014 at the International Association of Chiefs of Police (IACP) conference in Orlando, FL. We are on a mission to educate our police officers, firefighters, EMTs and other law enforcement officials about how to identify HD and other neurological disorders and how to approach individuals who may be cognitively impaired. Please support this very important program. To download brochure for your local law enforcement/first responder agency, click here: Law Enforcement Brochure To watch one of our law enforcement education video’s please visit: https://vimeo.com/310700022

Download powerpoint

The first international newspaper for the Huntington’s disease community, “The Huntington’s Post” is an online newspaper written by and for the Huntington’s disease community. Articles about research and events are written by the community for the community. Your donations will help us continue to maintain this website and publish vital and informational articles all about JHD/HD and trials/studies!