Hello to all,
My apology. Please ignore my blog post this morning about Roche. It is an old article. 
This is information, from Roche’s website, about the Huntington’s disease drug by Roche: Tominersen
We Can Never Lose HOPE…..
Prilenia Plans to Submit Marketing Authorization Application (MAA) in the EU for Pridopidine in Huntington’s Disease
-Following positive pre-submission meetings with regulators, Prilenia Therapies plans to submit its MAA (Marketing Authorization Application) for pridopidine, in Huntington’s disease (HD) in mid-2024.
-If approved, pridopidine could be commercially available to patients in Europe as early as 2025. 
Activation of the S1R by pridopidine enhances the clearance of toxic proteins, increases energy production, and reduces cellular stress and inflammation. These mechanisms are crucial for a neuron’s function and survival.
Click here to read the full article
“Prilenia holds orphan drug designation for pridopidine in both HD and ALS in the United States and EU. In addition, pridopidine has received Fast Track designation by the U.S. Food and Drug Administration (FDA) for the treatment of HD. Drugs that receive Fast Track designation may be eligible for more frequent communications with the FDA and may also qualify for accelerated approval and priority review of new drug applications.”
We Can Never Lose HOPE…..
San Francisco Bay Area Chapter, SF Chapter Social Worker
HDSA San Francisco Bay Area Chapter Hires a Social Worker
Good news for the San Francisco Bay Area Huntington’s Disease community.
The HDSA San Francisco Bay Area Chapter has hired a part time social worker, Satve Ilango who will respond to phone calls, messages on a new local Huntington’s Disease Chapter helpline that anyone can access.
Satve can answer questions about Huntington’s disease, local resources like a support group, refer to HDSA Center of Excellence at Stanford Medicine or UCSF Medical Center, testing, family planning and much more.
Or if you like email her at: [email protected]
Satve’s information:
HDSA Company number is: (212) 242-1968
Extension number is: 604
Direct line is: (650) 587-0988
We Can Never Lose HOPE…..
Exciting News!!! Happening This Week Only!
Once again, owner of Kate’s Single Batch Toffee in San
Rafael California, is selling her DELICIOUS toffee and donating a portion of the proceeds to the HDSA San Francisco Bay Area Chapter!
$10 from every “Huntington’s Disease Fundraiser Box” will be donated. Every dollar helps in funding Huntington’s disease (HD) research.
Please order here: https://katestoffee.com/collections/huntingtons-disease-fundraiser-toffee-box/products/huntingtons-disease-fundraising-toffee-box
We Can Never Lose HOPE…..
Celebrate RARE DISEASE DAY with Huntington’s Disease Society of America (HDSA) 
Leap years come every four years and this year we have an extra day to reflect, celebrate life, but most importantly – raise awareness for our Huntington’s Disease (HD) family.
This year, Rare Disease Day falls on that extra day, February 29th, 2024. The RAREST day of the year! For the HD community, this means an extra day to support each other, to
spread the word about HD, and to advocate for all rare diseases.
HDSA is joining forces with individuals from over 7,000 rare diseases affecting 300 million people, their families, and carers to raise awareness about rare disorders like HD.
Check out https://www.rarediseaseday.org/ to learn more about the rare disease community and the events happening worldwide. Visit hdsa.org/rarediseaseday to join us in turning up the global volume for Huntington’s disease awareness and to support HD research and world-class HD resources for families across the country.
We Can Never Lose HOPE…..
I’m sending the blog out again because I forgot to add the link to the video for those of you who want to watch it.
It’s a very exciting time for Huntington’s disease (HD) research/clinical trials
because there are many promising clinical trials being conducted around the world. 
In the video, (click here), uniQure, a global leader in gene therapy presents the latest update about their study of HD gene therapy AMT-130 in the ongoing HD-GeneTRX trial, and answer community questions. Speakers include Dr. Ed Wild, FRCP, Professor of Neurology at University College London, and Walid Abi-Saab, MD, Chief Medical Officer at uniQure.
Read the complete uniQure Press Release here (Dec. 19, 2023). “The clinical assessment trends in the ongoing studies of AMT-130 look very promising and continue to show disease stability in Huntington’s disease patients treated with this one-time administered gene therapy, several of whom have now been followed more than two years,” stated Walid Abi-Saab, M.D., chief medical officer of uniQure.
We Can Never Lose HOPE…..
In my 67 years of life on this planet, I’ve come to realize that many families have challenges during sometime in their lives, whether it be separation or divorce, parenting issues, pressure at work or school, unemployment and financial problems, illness or disability of a family member, death of a family member, drug, alcohol, gambling addiction, a child with autism.
It’s not to say that these stated challenges are not difficult. For families struggling with Huntington’s disease (HD) for generations, like the Marin family, I think HD is the cruelest disease on the planet.
It’s a very exciting time for Huntington’s disease (HD) research/clinical trials because there are many promising clinical trials being conducted the world.
In the video, (click here), uniQure, a global leader in gene therapy presents the latest update about their study of HD gene therapy AMT-130 in the ongoing HD-GeneTRX trial, and answer community questions. Speakers include Dr. Ed Wild, FRCP, Professor of Neurology at University College London, and Walid Abi-Saab, MD, Chief Medical Officer at uniQure.
Read the complete uniQure Press Release here. “The clinical assessment trends in the ongoing studies of AMT-130 look very promising and continue to show disease stability in Huntington’s disease patients treated with this one-time administered gene therapy, several of whom have now been followed more than two years,” stated Walid Abi-Saab, M.D., chief medical officer of uniQure.
We Can Never Lose HOPE…..
The following is from my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. Chapter 3, page 48.
This scene takes place after my college graduation and the epiphany I experienced that lead me back to John.
John came to my graduation even though we weren’t together.
“That evening, exhausted from the weekend of celebration and moving, I lay on my mattress, which was still on the floor, and stared out the window. The words I’d written on that desk pad continued to float around in my mind as I tried to make sense of Heather’s tragedy. As I drifted off to sleep, I saw the phrase you never know what’s going to happen in life swirling like a huge banner blown by a hurricane. I was running after it, yelling, ‘Come back, come back.’
At three a.m., I work with a jolt and sat up in bed. At that moment, my path became perfectly clear. Nobody knows what’s going to happen in the future, I remember thinking as distinctly as if I’d said the words aloud. I’m not going to walk away from the love of my life because he might have a disease. I’m a strong woman. I will stand by his side, support him not matter what, and we’ll get through this together. Then I fell into a deep, peaceful sleep, the first I’d had in months. I woke up early, refreshed and full of energy, and wanted to wake Kate and Sue to tell them the news. But first, I had a phone call to make.
John was sharing a house in Ontario with four other boys. I hadn’t stopped to think he might not be the one to answer the phone, but he picked up on the second ring.
1977
‘Hello.’
‘Hi John. It’ Therese.’ The silence was so intense, it seemed like minutes, not seconds, passed before he spoke again. He sounded surprised.
‘Oh…hi. Is everything all right?’
‘Yes, everything’s fine.” I rested my head agains the wall. “I’m calling to ask your forgiveness. John I’m so sorry I hurt you and….and….almost destroyed us.’
‘Well…’ he seemed at a loss for words, ‘we all have our own way of dealing with hard stuff. I’m glad you took the time to think it through. I don’t want you to have any regrets. Unfortunately, Huntington’s will be part of my life, and my sister’s. Are you sure you can live with it?’
‘Yes, I can. I want to spend the rest of my life with you, if you’ll still have me. Huntington’s isn’t going to steal you away from me. We’ll get through it…if it happens,’ I said with conviction.’
‘Of course I still want you,’ John said, ‘I love you, and I always will. Hey, why don’t you fly to Pomona this Friday, and we’ll celebrate us and my graduation together?’
He didn’t have to ask twice.”
We Can Never Lose HOPE…..
There are many helpful Huntington’s disease publications, in English and Spanish, that are FREE to download on Huntington’s Disease Society of American website. There are a wide variety of Huntington’s disease publications, from swallowing issues to Juvenile Huntington’s disease. 
This information can possibly help you regarding a variety of concerns. They are:
Advocacy
Behavior
Caregiving
Clinical Care
Foreign Language Publications
General Information
Genetics & Genetic Testing
Juvenile Huntington’s Disease
Law Enforcement Issues
Nutrition & Swallowing
Personal & Family Issues
Personal Narratives
Physical & Occupational Therapy
If you need more information, please go to: Locate Resources, Clinical Care & Services, Living Well with HD, and Healthcare & Future Planning Community & Social Support.
We Can Never Lose HOPE…..