When COVID-19 became a reality, around March 11th, 2020, it changed so much in our daily lives and forced us to do things differently, like changing a fundraiser/event/convention to VIRTUAL events. Also, Huntington’s disease families had grave concerns how the virus would affect their loved ones living with Huntington’s disease.
The 35th Annual Huntington’s Disease Society of America Convention, that I usually attend, was switched to a VIRTUAL event, and redesigned in a matter of about 30 days! It was amazing at the speed HDSA changed it to Virtual.
John and I were looking forward to traveling to New Orleans, that’s where the convention was supposed to be held, because we usually add on two weeks for a vacation. What I missed most of all by it being virtual, were the hugs from friends and reconnection with friends who we look forward to seeing each year at the convention.
HDSA did not disappoint and I commend them for offering the convention for free which was a wonderful gift to global Huntington’s disease community. The sessions offered were timely, uplifting, and informative especially on Saturday, June 6th, with the updates on clinical trials.
The nonprofit my family supports, Huntington’s Disease Society of America (HDSA) is just one of the organizations making changes in their fundraising activities. Most HDSA Chapters/Affiliates, there are 100 Team Hope Walks across the U.S., are changing their Team Hope Walk, HDSA’s grassroots fundraiser, to a virtual event as is their Annual Convention on June 4-7, 2020. Sign up for Virtual HDSA Annual Convention; it’s FREE:
Please consider HDSA when making a donation to a worthy cause. Huntington’s disease is a rare, fatal, genetic brain disorder that has symptoms like ALS, Parkinson’s and Alzheimers. 10% of all Huntington’s disease (HD) cases are children with Juvenile HD. There are 41,000 symptomatic Americans and approximately 200,000 that are at risk for HD. There is NO CURE. HDSAwebsite
For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit 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 families.
In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.
Getting approved for Social Security Disability Insurance is a long frustrating process when one has been diagnosed with Huntington’s disease (HD) and can no longer work. HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimer at the same time. There is NO CURE.
I was very happy to learn the nonprofit, Huntington’s Disease Society of America (HDSA), hired a specialist to help HD families with the application and procedure to receive disability benefits. http://www.hdsa.org
HDSA offers a Disability Chat program which is designed to provide information, resources and support to both persons affected by HD and their caregivers who are either starting the disability process or have already filed but been denied benefits by the Social Security Administration as well as HDSA social workers who are assisting HD families with their disability applications in their region.
Each month, Disability Chat will feature a topic of interest for either HD families or HD social workers. Each segment will include a 45-minute presentation followed by 15 minutes for discussion with the audience.
I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease. We just announced that as of January 1, 2020, we will be a HDSA San Francisco Bay Area Affiliate. Amy Fedele is the Co-Chair, I’m the Chair. The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.
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/