My name is Heidi Ramos and I am extremely excited for this years' Huntington's Disease Society of America's 5k Walk in San Francisco.
This will be my Fourth walk to raise awareness for Huntington's Disease. It is also the 11th anniversary of the San Francisco HDSA walk.
In 2014, my incredible friends and family raised $4,700 for Team Heidi Ramos. In 2015, we raised another $6,300. In 2016, my fabulous husband Robert Ramos and I sold everything in our house that wasn't nailed down, and we raised $18,800! We could not have done this without our family and friends. We love you all like crazy!
Unfortunately, HD is a disease that doesn't get a lot of attention, so any money that is donated still gets me right in the heart. I am so grateful for your donations, as is our HD Community.
I inherited this disease from a biological parent that I never met, so I'm super blessed that no one in my family has HD. I have never seen it face to face. I have never had to take care of a suffering parent, a sibling, a spouse, or a child with this disease. I am however, watching this disease manifest itself in my HD loved ones.
I tested positive for the gene in 2009 in San Diego at the HDSA Center of Excellence in LaJolla. I took several months off of life and was afraid to live. I sat on the couch with my family and friends watching over me. Then one day I was able to get up - and I haven't stopped since. I'm married and have an incredible life, even with HD. I'm surrounded by loving family and friends that I couldn't do this without. We live each day for today, and have fun now - as my future is not guaranteed. HD can come any time for me.
Never ever be in a rush to get tested. It's something you can not "un-know", once you test positive it stays with you forever.
Find a support group where you can help others, and in return this will help you. I'm a very proud member of the Mill Valley HD Support Group where I feel at home with other HD warriors.
This event is always a lot of fun - Please come and support US! Blue wigs are optional!
Thank You again for loving us! We love you right back!
Huntington’s disease 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 during their prime working years and has no cure.
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 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
Across the United States, HDSA currently supports:
• 54 volunteer led Chapters & Affiliates
• 41 Centers of Excellence
• 65 Social Workers
• 160 Support Groups
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
Please walk with me by joining my team and help make a difference! If you cannot walk with us, please consider making a donation to our team fundraising page by clicking the ‘Donate’ button at the top of this page.
Thank you for your support!