Jenne is gene positive for Huntington’s Disease (HD) and has two children at risk. She found out HD was in her family in 2014 and has been working to advocate for patients, and raise funds for HDSA ever since.
In 2016, Jenne along with her family hosted the Freeze HD event in Los Angeles. She continues to participate in the HDSA annual Freeze HD event, along with other HD volunteer engagements with HDdenNoMore, and CHDI.
Jenne graduated from the University of San Francisco with a degree in International Business. She has worked for Experian for the last 13 years in a variety of roles from Professional Services, Account Management, and Program Management.
Kate Miner, her mother & 2 sisters.
After living in the Bay Area for over a decade, Jenne and her family relocated back to Southern California to be closer to her mom and sisters.
Kate wrote a book jacket comment that appears on the front of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the profits are being donated to HDSA. To date, John and Therese have donated $14,115.00. Therese’s author website: http://www.theresecrutchermarin.com
The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April 25, 2019). This date commemorates the completion of the Human Genome Project in April 2003 and the discovery of the double helix of DNA in 1953. http://www.ashg.org/
This year HDSA was very pleased to learn that ASHG’s featured essay contest topic centers on Huntington’s disease, posing a thought-provoking question about the family ethics around diagnosis. We hope this contest will promote awareness of HD by encouraging applicants to learn more about it and to think deeply about the issues faced by the HD community. For more information on the essay contest, click here
If you know a high schooler who might be interested in applying, please direct them to this website and spread the word! Essays are due March 8th, 2019, and winners will receive prizes of $100 – $1000.
100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Therese has donated $14,100.00 to HDSA which is the profit since the book was published in April 2017.
Our daughter, Vanessa, and daughter-in-law, Fran, were on the HDSA 2016 NYC Marathon Team and raised $110,000.00.
Our son Keith, son-in-law, Scott, Scott’s parents, John and I traveled to New York and cheered them on. We had so much fun while the runners raised money to help in the fight against Huntington’s disease.What-is-HD
I’m currently in a situation where forgiveness would allow me to move forward. But, I’m stuck and having a hard time forgiving because I don’t understand why it happened, it makes me angry, it indirectly hurting other folks and it’s counter productive.
I talk about kindness and forgiveness on my personal Facebook wall quite often, so at this time, I’m working on not just “Talking the Talk” but “Walking the Talk”.
“The act of forgiveness may just be the single most powerful antidote for the pain caused by others.
Forgiveness does not mean that you “forget it and move on.” Nor does forgiveness mean that you absolve the person of their actions.
Forgiveness, instead, is choosing to compassionately release the desire to punish someone or yourself for an offense.
Yes, forgiveness is a choice. Yes, you can forgive yourself. But here’s the thing: while we may accept these statements on the surface, we often have trouble following through on the act of forgiveness – be it forgiving ourselves or someone else.”
John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years.
Shana Verstegen with her mother who had HD.
It began long ago, 1978, when John’s family secret was discovered; his mom had HD. I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father. http://www.hdsa.org
So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk. John and I have created “The Marin Team” and want to raise $1,000.00. Here’s the link to register for the Walk or to make a donation to the event. Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)http://www.hdsa.org/THWSacramento
In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young. John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder
At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier. What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks. John’s unknown gene status weighed heavily on my mind. A Walkthrough Guide to Panic Disorder
To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration. Additional education, I felt, made me more marketable, and would replace time lost in the workforce. I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.
The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to:http://www.hdsa.org/THWSacramento
“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
Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising. https://www.ucdmc.ucdavis.edu/huntingtons/
The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure. Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.
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/