Mandi Sellers - Rogalski

Team Captain Sunshine and Rainbows St. Louis, MO Team Hope Walk

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We are approaching that time of year for the annual Huntington’s Disease Hope Walk! Every year this Walk is an amazing opportunity to raise some funds to this marvelous cause....

What a tremendous year for the HD community, more grants are being given to doctors that have one goal in mind, and that is to end HD or at least provide medicines, or therapies to end this debilitating disease or to bring it down to a more manageable level. 

Members of my family are sadly all too familiar with this debilitating disease after my dad’s positive test and my aunt Wilma, Grandma Dorothy and much 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, or the unfortunate cancer support. I think it is remarkable that their groups have the amazing following they have (ultimately I wish we never had anything like this to deal with in life that we were all guaranteed a healthy life but that is not the case, yet), but I wish we had the same support which is why I think this walk is so important and 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 may know a tough road lies ahead for me, and my family I will not walk down it quietly and thankfully for amazing support of my friends & 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. 

 

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