The HDSA Northern California Chapter is holding its 10th Annual Sacramento Team HOPE Walk.
Please come out and help in the fight against the cruelest disease on the planet; Huntington’s disease. (HD is a fatal, genetic brain disorder with no cure. It affects children and adults. It’s like having ALS, Alzheimer’s and Parkinson’s at the same time). http://www.hdsa.org
Huntington’s disease (HD) is considered a rare disease because it affects 1 in 10,000 people in the U.S.
Definition: Huntington’s disease (HD) 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 approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The gal in the top left hand corner is John’s mother and the three lovely ladies in the other picture are my sisters-in-law. They all died of complications from Huntington’s disease at young ages.
The disease affects children and adults and there is NO CURE. Juvenile Huntington’s disease, JHD, is approximately 10% of all cases.
John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a
We are so grateful John tested negative for the mutated Huntingtin gene in 2016. I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org
“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article: Yolo Student Thrives Despite Challenges
The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento TeamHOPE Walk to help families, like the Gonzalez’s. Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento. To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento
We are getting close to the Sacramento Team Hope Walk. Create your own Team and help the Northern California Chapter fundraise to continue supporting the four (4) Center of Excellences in Northern California, and the seven (7) Huntington’s Disease Support Group Facilitators.
If you are interested in volunteering for the Huntington’s Disease Society of America Northern California Chapter, there are many opportunities where you can help. http://northernca.hdsa.org/
Here are a few ways you can contribute to improving the lives of individuals and families affected by Huntington’s disease (HD):
* Participate in the planning and execution of Chapter events: Annual Team Hope Walk, annual Chapter Convention, and Kaiser Permanente Education Days * Provide transportation to HD families * Provide light housekeeping/childcare for HD families *Participate in clinical trials and observational studies * Make phone calls to donors to thank them for their contribution * Serve on the HDSA Northern California Chapter Board of Directors *Post on NorCal Chapter social media platforms: Facebook, Twitter, Instagram *Assist with marketing/publicity/outreach
HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local Huntington’s Disease Society of America Chapter. Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.
The Miller Family whose 3 children are involved in the NYA.
The NYA is made up of young women and men ages 9-29 from across the U.S. that are impacted by Huntington’s.
The NYA mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight. http://nya.hdsa.org/
Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds are being donated to HDSA. https://www.amazon.com/-/e/B06ZY85776
In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children. Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time. 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 approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://hdsa.org/what-is-hd/
Huntington’s Disease Society of America Annual Convention Continues:
Day 1. Leadership Day, for those in HDSA Chapters with Leadership roles, is today, June 7th. It will start off at 8 a.m. with a Continental Breakfast and at 9 a.m., Nancy Rhodes, Director of Field Development & Operations, and Bill Kline will be our first speakers. http://hdsa.org/about-hdsa/annual-convention/
After the meeting, at 6 p.m., there will be a Team Hope Walk for all to participate in. (You will receive a Team Hope Walk t-shirt.)
Then, the Convention Welcome Reception will begin at 7 p.m. and the Exhibit Hall will be open. (HDSA is graciously allowing me to sell my book again this year).
We Can Never Lose HOPE…………
HDSA Northern California Chapter Convention/Education Day
John and I are also on our way, in our RV; it’s about an eight hour drive from Northern California. We’ll be staying a Dockweiler State Beach; it has 3.7 miles of ocean frontage and 288 acres of beach and only four miles from the Marriott Convention Center where the Convention is being held.
This is my second Convention, and I was so impressed with HDSA staff, the support and hope that resonated throughout the three days last year. I truly believe this is my second family who understand the Huntington’s Disease journey because they are living it just as I did for 25 years with my three sisters-in-law, Lora, Marcia and Cindy Marin.
We Can NeverLose HOPE…………………
John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.
HOPE Walk held outside convention center at the 2017 HDSA National Convention in Schaumburg IL.
James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.