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Soaring Above the Storm: 5K Run and 1 Mile Walk for CADASIL - NJ, USA

Soaring Above the Storm: 5K Run and 1 Mile Walk for CADASIL

Please note that by lack of information, the event has been archived.
May 09, 2015

This is the first ever run/walk event for CADASIL.  All proceeds will benefit the CADASIL Association and CADASIL research.  We will not be using timing chips for this event.

The event will be held at Johnson Park in Piscataway Township, NJ.  You may sign up to run the 5K or walk the 1 mile course.  All participants who register by April 9th are guaranteed a free T-shirt.  Registrations received after this date will be available while supplies last.  Day of race registration begins at 8:00 a.m.

The 1 mile course is wheel chair friendly, and there is a discount for those who may need the assistance of another person to complete the walk.  You also have the option of paying full price for both participants if you would prefer to provide additional donation to CADASIL research.  Strollers and children are welcome in the run or walk.  There is no additional fee for children participating in a stroller.

We plan to have a DJ for the event, but you may bring your own headphones if you prefer.  There will be water available after the event, as well as some light refreshments.  There also will be sponsor tables set up from various companies.  If you would like to sponsor our race, please see the section on donations.  You also may make a flat donation to the CADASIL Association if you wish.

All registrations, purchases, and donations made through this site require a processing fee, which is included in the cost of your purchase.  If you would like to pay the processing fee yourself, you may select to do so at check out.

Thank you for your participation and support!  We look forward to seeing you on May 9, 2015 at Johnson Park!!


Personal Family Experience with CADASIL


My Uncle Steve suffered from CADASIL beginning in his 20s, but we never knew what was causing these physical and emotional troubles that always seemed to recur.  As I knew him, he was always a fun-loving man, making jokes, picking on me for anything he could, participating in family picnics, and celebrating with our family in each milestone of our lives.  All in all, he was a great man to know.  I was blessed that he was able to meet my own son, and officially be named a "Great Uncle", although he always was one to me.  However, there was one side of him I did not know as I was growing up.  He had a hard time holding a job, was not very motivated to care for himself, and at times would enter a depressed-like state.  Most of his loved ones did not understand these behaviors.  I saw more of this as I got older and also as CADASIL took over more of his life.


As I got older, I watched my uncle struggle as he was hit with stroke after stroke. Our family was disheartened each time he suffered a setback and was always worried about his well-being.  At times, we would get frustrated with him for not taking better care of himself – for continuing to smoke, not follow through with physical therapy or exercise, even not shaving his face, etc. At one point, my brother (who was studying to become a physical therapist at the time) had a conversation with him about his appearing lack of desire to improve. He expressed that it wasn’t really worth it to work on the physical therapy.  It took so much work to improve just a little bit.  In his experience, he would finally improve, only to have another episode and lose all of his progress and additional life abilities. It was exhausting for him.


As he entered his late 50s and the disease continued to affect him, he began to rapidly decline. He moved into a retirement community closer to his daughter, became completely dependent upon his wheelchair, and eventually required the assistance of home healthcare aides 24 hours a day. He had lost his ability to speak or eat or even control his emotions.  He also began to refuse to take his medications and lost a significant amount of weight in a very short period of time.  He finally lost his battle on May 16, 2014 at the age of only 62. Throughout his life, he had suffered a total of 7 strokes and countless TIAs, beginning when he was in his 20s.  In his final months, it was hard to tell how much he understood about his life surroundings as he was unable to communicate with more than a slight gesture.  It is saddening and confusing to try to understand why a life would be made to be spent in this way.  I can only hope that something good will come from his story.


There are so many families out there with similar stories-stories of multiple family members living through this tragedy, fighting every day-yet there is not enough research or even awareness to make this disease a priority in neurological studies. This run/walk has been organized in memory of my uncle, and in honor of all of those fighting this disease, or who have loved ones fighting this disease. Our goal is by making this an annual event, we can raise funds for research, and raise awareness of this disease throughout the world. Your participation and support is greatly appreciated by myself and so many others like me.


God bless,


Lindsey

The information about this race is based on information provided by the organizers or found on the official website of the event. Always check the official website for up-to-date information. If you have noticed any mistake, let us know at [email protected]

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