May is HD Awareness Month

Mission Statement

Mission Statements are important to an organization.  So what is a mission statement?

A mission statement is a brief description of a company’s fundamental purpose.

Author Therese Crutcher-Marin

It answers the question, “Why does our business exist?”  The mission statement articulates the company’s purpose both for those in the organization and for the public.

The following are mission statements from Huntington’s disease organizations around the world.  The mission statements are very similar; HD education, provide resources, family, advance research, importance of quality of life, enriching care.  

Help 4 HD https://help4hd.org/

To educate the world about Huntington’s disease and Juvenile Huntington’s disease through its multimedia communications platform and through community outreach efforts. The aim is to serve resource centers to provide information, education, resources, and care.

HDSA: http://www.hdsa.org

To improve the lives of everyone affected by Huntington’s disease and their families.

Huntington’s Society of Canada:  https://www.huntingtonsociety.ca/

Family is at the heart of our community. Our families and volunteers tell a powerful story of caring people who pull together to improve the quality of life for Canadians impacted by Huntington disease (HD). HD is a fatal hereditary brain disorder with devastating effects on both the mind and body. It is like having the symptoms of Alzheimer’s, Parkinson’s and ALS all in one disease.

Huntington’s Disease Association: https://www.hda.org.uk

To enable everyone affected by Huntington’s disease to live life to their full potential by:

  • Improving care and support
  • Educating families and the professionals who work with them
  • Championing the needs of the Huntington’s community and influencing decision makers

Scottish Huntington’s Association (SHA): https://hdscotland.org/

A Scottish charity that was established by families living with Huntington’s disease (HD) in the late 1980s. Experiencing directly the dearth of services available to them, the organization pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.

Hereditary Disease Foundation:  http://www.hdfoundation.org/

To fund innovative research towards curing Huntington’s disease and impacting other brain disorders.

Huntington’s Disease Foundationhttps://www.huntingtonsdiseasefoundation.org

Dedicated to eliminating Huntington’s disease through advancement of research and funding the cure; raising HD awareness; enriching care and support for all affected while improving quality of life.

European Huntington’s Disease Network:  http://www.ehdn.org

The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD. Through the EHDN a platform has been created such that basic scientists, clinicians, patients and families can collaborate on academic and industry studies to fulfill its mission.

CHDI Foundationhttps://chdifoundation.org

To develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.

We Can Never Lose HOPE……

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

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