The nonprofit, Huntington’s Disease Society of America (HDSA), mission is dedicated to improving the lives of everyone affected by Huntington’s disease (HD). HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimers and Parkinson’s at the same time and there is NO CURE. What is HD?
On September 8th, 2020 Drs. Ed Wild, Jeff Carroll, Rachel Harding & Sarah Hernandez answered HD Research questions live. To watch this webinar go to: https://youtu.be/dUsEnvPftDM
*SAVE THE DATE*: On Tuesday, December 8th at 12pm (ET), HDBuzz co-creator Dr. Jeff Carroll along with editors Dr. Rachel Harding and Dr. Sarah Hernandez will answer your Huntington’s Disease research questions.
Since I’m strongly connected to the nonprofit, Huntington’s Disease Society of America (HDSA), I did not know much about The Huntington Study Group (HSG) which is a clinical research network focused exclusively on Huntington’s Disease. https://huntingtonstudygroup.org/
Despite the COVID-19 pandemic, scientists, clinicians and industry experts are still meeting (albeit online) to discuss the latest research in HD drug discovery and the findings from HD clinical trials to continue to push HD research forward.
On October 29th, the HSG began with a schedule jam-packed with virtual talks from researchers, clinicians and different companies who are all working towards finding new medicines for HD. The day encompassed many interesting presentations which covered a lot of the recent developments in HD drug discovery. huntingtonstudygroup.org/about/our-annual-meeting/
To read about the HSG annual conference in plain language visit:
John and I ask for your pledge to support Huntington’s Disease (HD) research to help families like mine. John and I lost his three (3) sisters, mother, aunts, uncles and cousins to this horrific disease that has NO CURE. What is Huntington’s Disease
Sign up for the 14th Annual San Francisco VIRTUAL Team Hope Walk this Saturday, October 3rd, or make a donation to help in the fight against HD. https://www.hdsa.org/thwsanfrancisco
A virtual walk is a real walk, but on your terms: You get choose to your own course, you can walk in your local park, hiking trail, driveway, neighborhood, or in your house and even on treadmill! Invite your friends and family to be on your team, they can walk with you wherever you are.
The San Francisco Virtual Team Hope Walk is coming up this Saturday, October 3rd! Please DONATE or PLEDGE to support my friend, Amy Fedele, as she and her family walk to support Huntington’s Disease research.
Amy was diagnosed with the gene that causes Huntington’s disease (HD). 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 usually during their prime working years and has no cure. More about HD
She volunteers her time to raise awareness and raise money to offer additional resources. She supports families affected by HD, like her own, so they never feel alone in their fight against HD.
Amy’s mother also tested positive for HD, as well as her uncle and aunt who passed away due to complications from HD. She’s her mother’s caregiver and, luckily, her brother tested negative for the gene that causes HD.
To make a donation to Huntington’s Disease Society of America (HDSA), click here: DonateHere
Author Therese Crutcher-Marin
100% of the proceeds from the nonfiction book I published, is donated to HDSA. Since publishing, I’ve donated over $16,000.00. Buy it on Amazon: AmazonWatchingTheirDance
On Saturday, November 2nd, Stanford University will host a Huntington’s Disease Symposium.
This event was created for patients with Huntington’s disease and their families or others who would like to learn more about the disease. This symposium will highlight current research and experimental therapies, measures that improve health including nutrition, exercise, and physical therapy strategies to improve psychiatric and cognitive challenges in Huntington’s disease and ways to support the patient and families.
The symposium will highlight experts from Stanford Center of Excellence.
The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/
After I returned from the 2019 Huntington’s Disease Society of America Convention in Boston in late June, I began wondering how and what the partners (sponsors) of the event contribute to the Huntington’s disease community.
Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time. There is NO CURE.
On the back of the Convention Guide Book is a list of some of the partners. Today I’ll post about LUNDBECK. lundbeck.com/us/about-us
Insight from Lundbeck’s Patient-Focused Approach to Business:
“Lundbeck offers financial support, and does it with a real understanding of what patient communities value and need: Patient groups are often strained for financial resources, which is why it’s not only important that we offer support generously, but in places where it can make the biggest impact. From many years of listening to patients, we have seen time and again how important it is for people to be able to connect with each other at patient group events and conventions. That’s why we introduced annual scholarships to help patients and their families attend the Huntington’s Disease Society of America (HDSA) Convention.”
Thank you to Lundbeck Pharmaceutical Company for offering scholarships to Huntington’s disease (HD) families so they are able attend the Annual HDSA Convention. It’s so important for HD families to connect with the HD community so they do not feel alone.
In 1979, Nancy Wexler, an American scientist, and her team began a collaboration with the affected families of Maracaibo. Due to breakthroughs in recombinant DNA research, the “Gene Hunter team”, as they were called, were able to initiate a study in which they created pedigrees, or family trees, of the vast network of HD patients in the region. Because the genealogy record was so thorough, the researchers were able to discover that all the residents of Lake Maracaibo had a common ancestor, Maria Concepcion Soto, who first arrived in the region sometime in the 19th century. She is considered the “founder” since approximately 20,000 descendants at risk for HD could be traced back to her. Bio on Dr. Nancy_Wexler
With this wealth of data, the team was able to narrow down the location of the HD gene in 1983. This discovery was a huge scientific breakthrough, not only in the search for a cure, but also for understanding genetic inheritance.
Kristina Cotter, a Ph.D/M.S. Candidate, Genetic Counseling is spearheading a Huntington’s disease project. This is what Kristina shared with me.
“This study is Stanford IRB-approved and is an Huntington’s Disease Society of America (HDSA) sanctioned study. I designed it as a part of my master’s research project for Stanford’s genetic counseling program. I’ve been working with Leora Fox at Huntington’s Disease Society of America (HDSA) https://www.linkedin.com/in/leora-fox-28a59562/to help get the word out. It is advertised on the HDSA website at this time, and support group leaders should be sending out information soon.”
Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family. Her mother, and two sisters tested positive. Kate tested negative. What-is-HD?
Jenne Coler-Dark & her husband
Kate & her 2 sisters
Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment. She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSAFREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.
A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story,Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story
The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time