Thank you for visiting my personal fundraising page! With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones. MANY thanks for the amazing team support! FAITH HOPE AND LOVE! Thank you team, for being there for me and my family! I love you all! This fight would not be won without all of you!
My Name is Amy, I am 35 years old. My family has a history of HD and I am Gene Positive! I am a volunteer with HDSA. I have volunteered with HDSA for about 6 years now. I was on the Northern California Board for HDSA and now I am looking forward to building the HDSA San Francisco Board along with Therese Crutcher-Marin! I ran the 2018 Sacramento Team Hope Walk and ran the San Francisco Team Hope walk since 2015. Feel free to email or call me about ANYTHING! I am always here to talk, listen and give you my hand. You are now my family! Gene Sisters and Brothers! WE GOT THIS!
About My Mom
My Mom, age 64, was diagnosed with Huntington’s May 2012, after having to admit her to a psyche ward. She is now seeing Dr. Alexandra Nelson, at UCSF. I thank GOD for her! Mom's CAG count is 41. She has shrinkage of the brain. I believe she has suffered with it since 2003. Mom has psychosis symptoms and we just started to see chorea in her face and hands. Her memory has been affected but still can remember a lot.
I would rather go on about how amazing she is! My mom is an amazingly strong woman. My dad died, of a heart attack, when I was 3 years old. Mom took in 3 foster kids after he passed. She had several foster kids until I was 18 years old. She also had her own business, Taking care of elderly people. She is a God fearing woman and brought us all up doing missionary work, volunteering our time for those in need, and doing God’s work. She remarried in 2004 to an Amazing guy named Al. I couldn’t ask God for a better person.
My CAG count is 41. I was found Gene positive, November 2010. Why I decided to get tested, was because I knew my family suffered from HD and I had to prove to my Mom she was suffering from the disease. I thought, if I get tested, and show positive, Mom will get help. But it did not work. It did not dawn on me, that I am about to find out my future, until I was sitting in the Doctor's office and he said, "Amy, you tested positive."
I got on the phone with Andrea Zanko at UCSF. We set up an appointment with her and this is where my journey started with UCSF.
2014, I start Enroll-HD and 2016, I was accepted into a blind drug study with UCSF.Laquinimod (LEGATO-HD). UCSF has been amazing.
2017, I had to stop the Legato study, due to a new diagnosis of Stage 3 Breast Cancer. My fight will continue for HD. I am going to remain positive!
About My Family
My older brother was tested, Sept 2013 and does not carry the Gene. Which is AMAZING, because my niece will not have the Gene.
My Mom's older sister passed away at age 65, August 2015. The past few years, she was in a nursing home. She was bed bound and on liquids.
My mom's younger brother, age 60, has a CAG count of 42. He has worked with UCSF and natural medicine. He has beaten the normal age range, they normally give patients with his CAG count. He has been able to push off progression.
Achievements along the road to sharing HD with the world:
HDSA Annual Convention: 2017- I received Person Of The Year, from HDSA. Since I was going through Chemo, Heidi Ramos received the award for me.
September 2017- 49er's presented me with the" Community Quarterback Award " for all of the volunteer work I have done.
June 2018- HDSA Annual Convention,The much-anticipated Research Forum featured a first-of-its-kind panel which presented the history of the discovery of the HD gene and how it has led to the development of a promising new potential therapy for HD using antisense oligonucleotides.
The panel included Dr. Jim Gusella, Dr. Anne Smith, Dr. Holly Kordasiewicz, Dr. Robert Pacifici, Dr. Doug Macdonald, Dr. Ed Wild, Dr. Blair Leavitt, Erik Lundgren, Dr. George Yohrling and HD family advocate Amy Fedele.
It was such an honor to stand on stage with these amazing people and speak for HD community! Below is the link to the research forum. Check it out!
In The End
If I worry about what lies ahead, It will only make things worse. As much as I want to ask God why instead I am trusting in him. Faith, Hope, and Love. That is all we have. We will stay strong. I truly believe we will find a cure.
Please register to walk with me and help make a difference! If you cannot walk with me, please consider making a donation to my personal fundraising page by clicking the ‘Donate’ button at the top of this page.
Also, Please post and share as much as you can!
About HD and HDSA: The Huntington’s Disease Society of America is the premier not-for-profit 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 family.
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.
Thank you for your support!