We are getting close to the HD walk yet again and this year I’m buzzing with so much renewed hope towards finding a cure because of the remarkable new technology being worked on. This year one of the biggest breakthroughs since the discovery of the HD gene is a new technology called “gene silencing.” This technology has been successful in clinical trials to lower the HD gene, but has yet to be found out via clinical trial whether this will help people with HD or how it will affect them. This is massive and could be life saving for so many people. Which is why my focus to raise money continues because with the help of each and every one of your donations, we are changing HD and giving so many people the possibility of hope for a cure. And not some farfetched daydream, this is hovering right over us waiting to be real. This is what your donations have helped us accomplish for so many years!!!
Members of my family are sadly all too familiar with this debilitating disease after my dad’s positive test and my aunt Wilma, her son Geno, my Grandma Dorothy and many further back generations all fought and lost their battle with Huntington’s disease. But my goal is to raise awareness about this disease, most people have never heard of it before, and that is great if you have never had to deal with it, consider yourself very fortunate, however with it being considered such a small community that is affected by the disease we are constantly being overlooked in the medical community because the money for research just isn’t there like it is in the major diseases. This walk is so important because we are a smaller community but I’m very glad to see it getting bigger and bigger each year. Ultimately by raising awareness more people will be willing to make donations and we will hopefully be able to make medical discoveries to cure this nightmare once and for all!!!!!!!!!!!!!
I am one of those at risk numbers with a 50/50 risk of developing this disease– I am a face of HD. And while I understand the possibility of what may lie ahead for me my family I will not walk down it quietly and thankfully for amazing support of my friends, husband, family & I won’t do it alone either. My dad’s admittance to the nursing home and all the difficulties that have come with it have inspired me to do everything in my power to make a difference and move forward with finding a cure! To say this year has been difficult would be an insulting comparison with reality, my close friends, husband, family know all too well, but have stuck by my side in my most challenging year yet. But nothing inspires me more than a challenge!
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.
Imagine Parkinson’s terrible uncontrolled movements, Alzheimer’s brain power loss, the speech difficulty and the rest of the endless list of symptoms all rolled into one. It makes even the simple task of putting on your clothes impossible, or telling someone what you can even do to help can be a major task when unable to communicate or use the brain power to put the thoughts together and speak. That is just a teeny tiny glimpse into the daily struggle which is why I am so passionate about educating people and becoming a force against it.
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 link below to donate to my cause I would be touched as I have been touched and touched time and time again each time this comes around.