What is Huntington’s Disease? by Melissa Bixby, MS, CCRC, Project Manager, Movement Disorders, Inland Northwest Research
H
untington’s Disease (HD) is a genetic disorder that causes a mutation or expansion in the Huntington’s gene, located on chromosome 4. This abnormal mutation in the Huntington’s gene causes the nerve cells in the brain to breakdown over time. HD affects a person’s movement (ability to walk, speak, control movement), cognitive ability (reason, memory, concentration) and emotions (aggression, mood, reaction). HD is an inherited disease, which means the gene for this disease is passed from parent to child. Every child of a parent with HD has a 50/50 (fifty percent) chance of inheriting the HD gene. Every person who inherits the expanded HD gene will eventually develop the disease. Symptoms usually appear between the ages of 30 to 50 and worsen over a 10 to 25year period. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. It is estimated that 3 to 7 out of every 100,000 people have HD.
Why is it important for research? The HD gene was identified in 1993, and currently, there is no therapy which can halt, slow, or reverse the progression of HD. However, much of the current HD research is focused on understanding HD and how to modify or stop the progression of disease. Doctors and scientist are using gene-editing drugs to stop the formation of the harmful HD proteins in the brain. Unfortunately, because this disease is rare, there is not as much funding for research. Although there were recently several setbacks in latephase HD clinical trials, all trials (even failed ones) provide important knowledge, that scientists can learn from and build upon. Currently there are several new Phase I trials including, Branaplam, a repurposed spinal muscular atrophy drug, from
Parkinson’s Support Groups In-person support groups have been suspended during the pandemic. Contact the individuals below to learn if they are meeting virtually, and what their plans are for resuming in-person groups.
COEUR D’ALENE
SANDPOINT
Lake City Center, 1916 N Lakewood Drive 1st Friday of the month at 1 - 2:30 pm Contact: Beth Hatcher 208-635-5243 Email: cdapsg@hotmail.com
East Bonner County Library meeting room, 1407 Cedar St., 2nd Mondays at 2 - 3:30 pm. Contact: A.C. Woolnough 208-304-5756 Email: acwooly@gmail.com
Women with Parkinson’s Affinity Apartments, 3594 N. Cederblom Street 3rd Friday at 1 pm. A casual get-together. Free to people with Parkinson’s and their caregivers.
KALISPELL
Gateway Community Center 1203 Hwy 2 West, United Way Conference Room Parkinson’s Disease Support Group of Flathead Valley 3rd Wednesday of the month at 3 - 4:30 pm Contact: Marjory McClaren 406-250-5577 Email: marjmccl@yahoo.com Contact: Lynnell Gravelle 406-756-7250 Email: lynnell@arspt.com 4th Wednesday of the month at 3 - 4:30 pm Contact: Lynn Woods 406-420-2321 Email: lynwoods@gmail.com This is a new group forming now to address the needs of Parkinson’s Care Partners. Please join us!
36 Wise Guide | 2021/2022 Edition
SPOKANE
Women Affected by PD Support Group Riverview Retirement, Dining Room 1801 E Upriver Drive, 1st Thursdays at 1 - 2:30 pm A group of remarkable women living well with Parkinson’s. Contact: Sally Sullivan 509-499-5113 Email: 22sullys@gmail.com Parkinson’s Support Group Touchmark on South Hill, 2929 S Waterford Drive 3rd Wednesdays at 2:30 - 4 pm Contact: Lori McCormick 509-321-8130 Email: lori.mccormick@touchmark.com
Check www.NWPF.org for details Follow us on Facebook! @NW Parkinson’s Foundation
