CJD Awareness Day

Ribbon made by my Aunt Doreen :)

Today is National CJD Awareness Day. 

Those of us who have lost a loved one to CJD miss them every day, but today is a day when all of us who are missing that person (or people in some cases) can join together to honor the memory of our loved ones and advocate for global awareness and education.

CJD is a rapidly progressive, degenerative, always fatal brain disorder. It is a disease that our family saw firsthand when it took the life of my dad in September 2012. 

There are a lot of doctors around the world who have yet to see a case of CJD and some may never see it in their careers. This makes diagnosing someone with CJD even more difficult because they don't have prior experiences to utilize. CJD is often initially misdiagnosed and it may ultimately never be diagnosed if the doctors don't come to that conclusion before CJD takes the patient's life.

Some of the diseases that CJD can be misdiagnosed as are Alzheimer's, Parkinson's, ALS, and Huntington's, just to name a few. The symptoms of someone with CJD can be very similar to these diseases, but are typically more rapid in their progression. The similarities of these diseases can be a benefit, though, as research that is done on one of the diseases may help lead to a cure or treatment for one or several of the others. This is another reason that awareness is necessary - if those links between these "similar" disorders are known, researchers can work together toward the goal of eradicating all of these diseases.

As those of us who have been affected by this disease band together and make our voices louder, we can drum up support for awareness and research and, one day soon, a cure for this disease. A cure may start with a test to detect, in its early stages, that it is CJD the patient has, giving the family more time to become comfortable with what they're dealing with, it may be in the form of a way to treat or reverse the symptoms, or it may be the ability to pin-point what it is that triggers the symptoms. Any of these options would be such a positive step forward and it is these types of things the researchers we're funding are working toward with passion!

Last year at this time, our family was preparing for a large Birthday Bash Fundraiser in memory of my dad. We raised over $50,000 to help aid in research and help start a support program for those families who are affected by CJD. We funded two research grants through the CJD Foundation in my dad's name, and, this year, we hope to fund another! We are continuing to do what we can to spread awareness and help to fund the research that is vital in curing CJD by setting a goal to raise the $10,000 needed to fund another grant. Again this year, our $10,000 will be matched with another $30,000 from the CJD Foundation, making the grant equal a total of $40,000! We are hoping to do this with the help of our amazing family, friends, and community who made our event last year so successful, except, this year, they all get to help from the comfort of their own homes!

You can help us work toward curing CJD by clicking here and donating any amount you can that would go towards a research grant in my dad's name. 100% of what you donate will go to the research - none is taken out to go towards administrative expenses or anything of that nature. Last year we sold tshirts, served a great meal, raffled off prizes, carried out silent and live auctions, and collected free-will donations. Everyone went above and beyond to make the huge event a success, and we hope that you will help us make this effort a success as well with a cash donation!

Thank you so much for being a part of a cause that is so important to our family!