After the first of the year, I decided to step down from the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board to collaborate with a group of Huntington’s disease (HD) advocates in the San Francisco Bay Area to develop a HDSA Affiliate.
With a population of approximately seven (7) million, a HDSA Affiliate that could evolve into a Chapter would support Huntington’s disease (HD) families. What is Huntington’s disease? Click here to learn about HD. http://hdsa.org
So what is an HDSA Affiliate?
An affiliate is a regional representative of HDSA that seeks to promote, assist, enhance and further HDSA’s mission by organizing solely for the purpose of carrying out HDSA’s programs, services and activities through the formation of an officially recognized HDSA Affiliate with a revocable license to use the HDSA name, intellectual property, materials and reputation for that sole purpose for so long as it is a recognized Affiliate. The reality is that an Affiliate is a “Chapter in Training”.
The paperwork has been filed with HDSA and the process could take up to six months to a year. We are hoping to have a decision from HDSA by the end of 2019.
I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease. Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon. 100% of the profits are being donated to HDSA.
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: https://www.theresecrutchermarin.com
The nonprofit, Huntington’s Disease Society of America (HDSA) continues to regularly update information on research and advocacy. Consider signing up for the HDSA newsletter. It contains a wealth of information. http://hdsa.org.
Perhaps you are wondering about Right-to-Try legislation for Huntington’s disease patients who are end stage. HDSA provides a summary of the topic.
On its face, the idea behind Right-to-Try legislation is to allow families access to medications and treatments still in the clinical trial phase when an individual has no other treatment options left and is facing a terminal illness. Right-to-Try legislation focuses on cutting red tape in the Food and Drug Administration (FDA) to allow easier access to these experimental treatments. But, in reality, the FDA isn’t the issue. Access to investigational therapies is already permitted through the Food and Drug Administration’s expanded access program. FDA currently approves 99.7% of all expanded access requests submitted by physicians and companies for patients with immediately life-threatening illnesses who cannot participate in clinical trials. Removing FDA from the process of obtaining investigational drugs, as Right-to-Try proposes, increases the risk of patient harm and creates confusion. When access to an experimental drug or treatment is denied, it’s almost always because the request has been denied by the pharmaceutical company, not the FDA.”
At this time all Expanded Access and Right-To-Try requests to Roche will be denied. This was discussed in the recent HD Community-wide letter that was released by Roche in June. Specifically, they said “We understand that families may wish to seek access to investigational medicines as soon as possible. However, access to RG6042 can only be through clinical trial participation at this time. Because the benefits and risks of RG6042 are not fully understood, we are not able to grant pre-approval, compassionate use or “right-to-try” requests. The company Roche/Genentech
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:
Today, Friday, is the day we begin to explore Huntington’s Disease topics presented by experts/researchers/doctors in the HD world. The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.
At 9 a.m., the day will begin with the Opening Keynote Speaker.
By early morning, the attendees will select the Educational Workshops they wish to attend
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.
California Resident Convention Scholarship- The intent of this scholarship is to help families and individuals who live in the state of California to attend the 33rd Annual HDSA Convention. The scholarship is open to any family member or caregiver who is affected by Huntington’s disease.
100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA. http://www.hdsa.org Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.