Resources
We will always provide the resources we feel will be most helpful to the HD/JHD community. As our organization grows, and more information becomes available, it will be updated here.
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Our goal as a non-profit organization, is to be able to financially assist families affected by HD and JHD. A Huntington's Disease diagnosis can be devastating and most of the time, we aren't prepared for the financial hardship it can bring. We know that a lot of families struggle with household bills, prescriptions, medical equipment, etc. That's our primary purpose, is to help lighten the load for our families. Our hope is that we will also be able to help families attend HD/JHD events. They are so family oriented, educational and fun!
We will also be contributing to research efforts and participating in clinical trials as often as possible. Crystal is currently enrolled in two different clinical trials.
There are several organizations that we have provided information and links to. We work closely with a few of them and attend events to different organizations.
We are all in this together! Together, we are a family.
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If you have any questions/comments, please reach out anytime and we will do our best to help you.
The Wishing Tree For HD is growing!
AFSP.org Call or Text 988 or text Talk to 741741
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"Whether you have struggled with suicide yourself or have lost a loved one, know you are not alone. Hear about personal experiences from people in your local community whose lives have been impacted by suicide"
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My family and I have been devastated by suicide loss. I immediately sought a grief counselor who just happened to be educated on HD. He pointed me in the direction of this organization that I soon became involved with. It helped me find ways to deal with my grief while honoring my daddy.
- Crystal Collinsworth
HD Awareness for Law Enforcement
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LEEP - This is such an amazing program.
"Before you detain a person you suspect is under the influence, please consider that he/ she might have Huntington’s Disease or another type of neurological disorder which may present the appearance of intoxication, defiance or refusal to comply"
This resource belongs to Help 4 HD International, an organization that is very near and dear to us. Their link is listed below and it's loaded with resources.
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"After a Huntington’s disease diagnosis, it's important to learn about one of its key symptoms, chorea. Find out how chorea affects those living with HD.
Here you’ll find information, inspiration, and resources to help you understand what to expect with HD chorea and how to talk to your doctor about preserving independence for as long as possible"
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Cormorant Garamond is a classic font with a modern twist. It's easy to read on screens of every shape and size, and perfect for long blocks of text.
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"By opting in to contribute de-identified medical data to research, you can join forces with thousands of others who are helping advance science. Because the more we know as a medical community, the more opportunity we have for discoveries that can change health for you, your loved ones, and people around the world"
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I participate in PicnicHealth and it's a very useful resource. As a patient with a large team of doctors, it's much easier for me to have all my records in one place. There's a monetary incentive for sign up.
- Crystal Collinsworth
Help4hdInternational.org
HDYO.org
Huntington's Disease Youth Organization
Resources for kids and young adults
HDSA.org
Huntington's Disease Society of America
Championsforhd.org
Champions For HD
HDReach.org
HD Reach
Honestlyhd.com
