Room to Read

Room to Read has built more than 750 schools and 7,000 libraries in some of the poorest countries in the world.  They appear to respect donations by running a low-cost, results-driven organization.  Find out more on their website.

Huntington Society of Canada

Volunteer chapters across Canada raise awareness and funds to support the Huntington Society of Canada, the only national charity providing support to families affected by HD, educating the medical community and working collaboratively with it’s international peers towards treatments and ultimately a cure.  The Southern Alberta Chapter blog provides further info on local activities if you are interested.

Huntington disease (HD) devastates families.  It has been described as similar to having Parkinson’s and Alzheimers at the same time.  Although this is an approximation, it provides the sense of how destructive HD can be.  It causes a slow death to brain cells, particurlary in the basal ganglia and severely affects a person’s abiltiy to think, feel and move.  The most identifiable symptom is uncontrolled physical movements, often referred to as dancing or chorea.  Other symptoms include slowed processing of information and radical changes to personality.  Any child of a parent with HD has a 50% chance of inheriting the gene, and ultimately, the illness.  Since it can be a 25 year deterioration between first symptoms and death, many families face HD at different stages across the generations at the same time.  Perhaps this is the cruelest misfortune of all.

However, promising research provides great hope to the Huntington community.  The HD story provides a fascinating insight into medical research, the dedication of researchers and how each breakthrough stands on the shoulders of many other scientists’ work.  Here are a few of the highlights.

  • In 1872, Dr. George Huntington, drew upon the experience of his father and himself in treating generations of patients to write a definitive paper entitled “On Chorea.”
  • In 1974, Dr. Milton Wexler establishes the organization which later becomes the Hereditary Disease Foundation to help research the disease that devastated his wife’s family.
  • In the 1980’s, his daughter Dr. Nancy Wexler was a primary driver behind the determined collection of genetic and medical information from communities around Lake Maracaibo, Venezuela.  This region has an unusually high incidence of HD families, all believed to be descended from the same immigrant many generations in the past.
  • This information led to discovery of Huntington gene in 1993.
  • Despite the ground-breaking announcement of a mouse model “cure” in 2006 from the UBC lab of Dr. Michael Hayden, there are still no effective treatments and a cure remains many, many years away.
  • In the U.S., anonymous donors have set up the CHDI Foundation.  CHDI’s goal is to apply innovative and systematic methods to find treatments and a cure for HD.

Amazing progress with just a little further to go.  We are so close!  With a specific gene identified, HD research can be more efficient than other diseases.  Lessons from HD research are expected to impact the fights against Parkinson’s, Alzheimer’s, stroke, brain damage, MS and other neurodegenerative diseases.

Do a little Googling and you will learn how genetic discrimination, DNA, the Salem Witch Trials, Woody Guthrie and international collaboration are involved in the history of HD.