Update on the event: Due to the date change pushed down from national from June to September 29 (outside of our team's control), many of us are no longer to attend the walk this year. We apologize on behalf of the HDSA organization for the schedule change, and look forward to future events!. We thank everyone who has contributed this year and previous years! A story from Marrissa: We starting getting involved with Team Hope Walks and the HDSA community after my husband was diagnosed with Huntington's Disease (HD) several years ago. We knew we wanted to have children and we also knew we did not want to pass the faulty gene along to our children. We underwent preimplantation genetic diagnosis (PGD) which is a technology that helps detect and prevent serious and life-threatening genetic diseases in embroys. We successfully had our child in May of 2017 and have been truly blessed with our little miracle who does not have Huntington's Disease. We know other families are not as fortunate and we continue to pray and hope that one day there will be a cure for this terrible disease. My sister Kerrie currently serves on the Rhode Island Chapter Board and the Walk Committee and has been working hard to raise awareness and funds for this event. We will walk this year for my husband and all of the other families affected by this disease.
The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports:
•54 volunteer led Chapters & Affiliates
•41 Centers of Excellence
•65 Social Workers
•160 Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.