HD Advocate & Writer

Two fundraisers to help in the fight against Huntington's disease.  https://sanfrancisco.hdsa.org/events/hdsa-san-jose-giants-fundraiser-

To the San Francisco Bay Area Huntington’s Disease Community Please join the HDSA San Francisco Bay Area Chapter  Education Day in partnership with HDSA Centers of Excellence at Stanford Medicine and University of California, San Francisco.   It’s a FREE event and lunch will be provided.  Register here We Can Never Lose HOPE….  

Please unite with the HDSA San Francisco Bay Area Chapter in its 18th Annual San Francisco Team Hope 5K Walk & Fun Run. Come join the fun dressed as a Hero or Villain character. Amy Fedele, Huntington’s Disease Advocate, organized the SF Walk for years and before her was another family that kicked it 18 years ago. The goal for the SF Walk  is $40,000.00; last year we raised $36,000.00.  All…

The first blog you received this morning, the links did not work. So, I’m sending again.  Thanks for your patience. In the past few weeks, I have shared information regarding the promising drugs that offer symptom control for Huntington’s disease (HD) patients.  If these drugs prove to be effective, safe and receive approval by the U.S. FDA, they can offer HD families a higher quality to their…

In the past few weeks, I have shared information  regarding the promising drugs that offer symptom control for Huntington’s disease (HD) patients.  If these drugs prove to be effective, safe and receive approval by the U.S. FDA, they can offer HD families a higher quality to their lives. This is HUGE for someone like my sister-in-law, Marcia, who had to stop working because she could not remember…

Dress up your family as a “Villain or Hero” costume and join the Huntington’s Disease community in the San Francisco Bay Area 5K Team Hope Walk  along Crissy Field. The fundraiser is in it’s 18th year at Presidio Sports Basement and the dollars raised help in the fight against Huntington’s disease (HD) and Juvenile Huntington’s disease (JHD). Register Here We Can Never Lose HOPE….

We are living in an age where there are many possibilities for a drug for to combat the symptoms of Huntington’s disease (HD).  It is an exciting time for the HD community around the world and my HOPE is at a new level. Another drug that silences the mutant huntingtin gene, is AMT-130 developed by uniQure.  (uniQure’s gene therapy) AMT-130 involves a harmless virus packaged with genetic material…

Another Huntington’s Disease (HD) promising drug, pridopidine, a pill, could improve quality of life for people by preserving their independence. HD often include slight disruptions in someone’s ability to perform day-to-day activities, such as handling their finances, remembering directions, and managing household chores. HD clinicians often use a rating scale to measure “Total Functional…

Over the next few months, I will report on five positive clinical trials being conducted around the world for Huntington’s disease (HD)who’s drug could potentially hold the key to a higher quality of life for HD patients/families. “The stormy trial updates that hung over the Huntington’s disease field in 2021 have certainly parted, making way for the bright and clear forecast we’ve had so far in…

The San Francisco Bay Area Chapter has a new volunteer, a freelance writer, Marisol Guzman, who is interviewing local families and writing their Huntington’s disease (HD) story. She then submits the article to media outlets in the Bay Area.  This is a new outreach project for the Chapter, human interest stories, to heighten awareness of this devastating disease.  The article is on my blog because…

The 6th Annual San Jose Team Hope 10K Timed Run & 5K Walk was an awesome event raising approximately $22,300.00!!!!    The San Francisco Bay Area Chapter couldn’t have done it without a team effort by all the volunteers who helped with outreach for sponsors, donations for the silent auction and raffle and day of event helper.  Thank you to all who made it a success!                               …

Of course, folks want to know how their donated dollars are spent by the nonprofit, Huntington’s Disease Society of America (HDSA).  Donors to HDSA, desire to know that their money is helping HD patients/families across the U.S. The pictures below are the programs and services provided by the HDSA Chapters and Affiliates fundraising efforts.  (approximately  55  Chapters/Affiliates) The money the…

Of course, folks want to know how their donated money is spent by the nonprofit, Huntington’s Disease Society of America (HDSA).  The picture is all the programs and services provided by all the Chapters and Affiliates fundraising efforts.  Online Support Groups: HDSA.ORG/OSG  HD-DCI: HUNTINGTONSDISEASE.RARE-X.ORG Telehealth: HDSA.ORG/TELEHEALTH  HD Trialfinder: HDTRIALFINDER.ORG   HDSA’s…

The 6th Annual HDSA San Jose Team Hope 10K Timed Run & 5K Walk is Saturday, June 15th, 2024 at Campbell Park in Campbell.  The HDSA SF Bay Area Chapter is working hard to raise $28,000.00 for Huntington’s disease research. Please  open  your  hearts  to  us battling  this  horrific  brain disorder  with  NO CURE. Registration and check in starts at 9 a.m. Saturday morning.  There will be…

May is Huntington’s Disease Awareness Month While my personal Huntington’s disease (HD) journey may be unique, it reflects the complex emotional and psychological aspects of living with the fear of Huntington’s disease. This disease not only affects individuals but also impacts entire families. Though I took the biggest gamble of my life and married John, who had an unknown HD gene status, for…