Huntington’s disease (HD) is a rare, fatal, brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers, simultaneously. There is NO CURE.
Because HD is very rare, HDSA’s business model focuses on its Mission Statement: HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. HDSA fulfill’s their mission by providing programs and services to HD families across our nation so they may have the highest quality to their lives on their long HD journey.
HDSA’s Vision Statement: A World Free of Huntington’s Disease HDSA also conducts research in the search for a cure or
During this important month for Huntington’s disease, please go to HDSA.org to learn about the disease and consider making a donation to help in the fight against this horrific disease.
Deciding whether to be tested for Huntington’s disease (HD) is a personal decision and a very, very difficult decision that will change your life. John was tested in 2016 and we are forever grateful that he did not inherit the mutated huntingtin gene from his mother.“The HTT mutation that causes Huntington disease involves a DNA segment known as a CAG trinucleotide repeat . This segment is made up of a series of three DNA building blocks (cytosine, adenine, and guanine) that appear multiple times in a row.”
Kate Miner is my hero for many reasons. She’s beautiful, a talented actress, musician and dedicated Huntington’s Disease advocate. Her family discovered a few years back that Huntington’s disease ran in the family. Her mother and two sisters tested gene-positive, while she did not.
Jenne Colar-Dark, Kate’s sister, is also an advocate and is on HDSA Board of Trustees.
I loved Kate in the TV series, Shameless, and I hope to see her again in another TV series.
Thank you Kate, for all you do for the Huntington’s disease community and many thanks to all who supported the Freeze HD event.
We Can Never Lose HOPE…
To help in the fight against Huntington’s disease, please make a donation to Huntington’s Disease Society of America. Every dollar helps provide services and programs that help HD families have a highest quality to their lives on their HD journey. Thank you.
HDSA doesn’t advertise their Centers of Excellence as palliative care, but it is palliative care; treating symptoms to improve quality of life and then connecting to community supports that are palliative (support groups, in home assistance, education events).
Huntington’s disease, a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s simultaneously, has NO CURE and slowly progresses over 10-20 years.
I believe it is vital for Huntington’s disease families to connect with a Center of Excellence to address issues as a family’s HD journey changes. The interdisciplinary team at the COE has a discipline/medication for just about every symptoms that occurs in HD patients.
An example: People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.
To address swallowing issues a referral can be made to a speech therapist who can help the patient and family address it.
As a Huntington’s disease (HD) Advocate and retired hospice professional, explaining the following three types of care is important for the HD community to know about when caring for a loved one with the disease. You can find these programs in your community.
Huntington’s disease (HD) is a brain disease that is passed down in families from generation to generation. HD has the symptoms of ALS, Parkinson’s and Alzheimer’s at one time and it strikes young. And there is NO CURE.
It’s very exciting and it could not have happened without the help and support of the Leadership Team; Uma Thontakudi, Steve McConoughey and Jay Denhart-Lillard.
Many thanks go to the Board members who helped the Affiliate realize its goal of become an official Chapter. Everyone on the Board is a volunteer as Huntington’s Disease Society of Americais 90% volunteer based.
Disappointing news for the Huntington’s disease community from Novartis Pharmaceutical Company regarding stopping the clinical trial VIBRANT-HD. Read full article here
“Tucked into its latest earnings report, Novartis confirmed to investors that it has stopped developing an experimental drug for Huntington’s disease.
The reason, according to Novartis, was an “overall assessment of the risk-benefit profile” observed in a mid-stage clinical trial named VIBRANT-HD. In August, Novartis said it had temporarily suspended dosing in the study, after discovering that some patients treated with the drug, known as branaplam, were experiencing nerve damage.”
Every day families around the world are confronted with challenges in their lives; a devastating Huntington’s disease (HD) diagnosis, a cancer diagnosis, a challenging medical diagnosis, an autistic child, a miscarriage, a significant death, divorce and many other threats. I don’t know of a family that has not had one at some time in their life. With that said, I took a risk for LOVE with my then boyfriend John, who I ultimately married, with an unknown gene status for Huntington’s disease. I decided that I was willing to take that risk because I believed, “Love that ‘endures all things’ islove that hopes in the face of circumstances that often seem dark”.
John and I had dark times, walking beside Lora, Marcia and Cindy, John’s three sisters, on their HD journey for over 24 years. Plus, living at risk for HD is stressful and can challenge a relationship, but John and showed the world that love can conquer any hardships, difficulties, and challenges.
It’s a shock when families learn that Huntington’s disease is in their family. I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.
HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region. Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.