While cleaning out the garage I came across a bin full of pictures and videos from the days of the CURE MS Foundation, a 501c3 nonprofit that I created from the ground up in 2008. I had joined the National Multiple Sclerosis Society, Greater Illinois Chapter's Board of Trustees the year prior quickly recognizing a need to hold a fundraising event in the suburbs since everything else seemed to happen in the city. I had a vision to create an organization to address the needs of people living with MS along with their friends and family who wanted to get involved in the MS movement closer to home. I also believed it possible to reach a broader audience in our fundraising efforts if more affordable affairs were made available. Initially, I was on a mission to prove that we could create a more cost effective way to throw a really nice dinner with entertainment well under the $500 to $1000 a plate events the MS Society typically host. As with anything you put all your energy and focus into, the CURE MS Foundation grew rapidly providing up to 5 or 6 events a year for people to get involved in including women's luncheons and fashion shows, golf outings, 3rd party scrapbooking, skydiving, and . pirate parties and our signature galas. None of the success of our foundation would've been possible without the support of so many kind volunteers but after 5 years of trying to keep up with the growing demands of what had turned into a big business, sadly I had to close the foundation down in 2013. Even with all the help from my friends, family and generous volunteers, I had to make a tough decision. Although we were raising desperately needed revenue for and awareness of the plight of people with MS, ultimately my own health was suffering. It's amazing to me now that I not only survived but thrived during this very demanding period of my life. I am beyond proud of the impact CURE MS Foundation made on both the MS community and a woman that thought she had no use to society anymore.
I have a confession to make. I did exactly what I promised myself and all of you that I wouldn't and got myself so wrapped up in life that I ignored my health for a bit, a dangerous proposition when you have a disease. Even one day without adequate sleep, nutritious food, meditation and exercise is enough to throw me off course but I pushed myself to exhaustion and I paid for it. I got up yesterday after just very minimal sleep feeling anxious and unsure whether I should even go out. I made it through a very busy day heading to bed early and woke up with a whole new attitude. I refuse to let outside stressors derail me from what's really important from now on. As long as I stick to a rather regimented schedule that includes lots of self care I know I'm going to feel better and everything else will fall into place in it's own time. I'm my own worst enemy most days but I need to stay focused on what's important: staying as healthy as possible so I can keep living my best life.
I'm not sure why I had such a visceral reaction to the video below, immediately breaking down in tears when a friend posted it on Facebook after the recent WALK MS. I don't know this woman but boy can I relate to her determination to cross that finish line on her own two feet. I feel so many emotions watching this: guilt for not trying to walk the last few feet at the WALK event myself, pride in her resolve to complete this challenge with the help of her husband, and sheer joy at the crowd's clapping encouragement. It's also not lost on me that the word FINISH is so prominent in this video because all of us living with MS will keep plugging along until there is an END to this disease that has taken so much away from us and our families. Each agonizing step this woman took is a reminder that we're one step closer to a CURE thanks to all the people who give us hope and love on this day and all year long.
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On this Mother's Day weekend especially, I am so grateful to still have my mom when so many of my friends have lost theirs. I am especially blessed to still have my mom's sister, our feisty Aunt Donna, who has always been like a second mom to me and my siblings. My whole family worries about me since my diagnosis with MS but no one frets as much as my dear mom and aunt do. Being a mom of 3 grown children myself, I realize that you never stop agonizing over your kids no matter how old they get. Throw a debilitating disease into the mix and the angst is multiplied tenfold. I really wish that my health issues would not cause my mom and aunt even one minute of sadness because they both deserve nothing but happiness in their golden years. Their love and support mean everything to me so I don't want to imagine a world with them not in it consequently I will spend this Mother's Day and hopefully many more being thankful for the amazing matriarchs in our family.
Besides a CURE for MS, my sincere wish is that everyone gets to feel the kind of love and support I felt at yesterday's WALK MS event. It didn't hurt that we had an absolutely gorgeous day for a change but our team,"Don't MS With Us" was over 40 strong raising 14K with the help of our very generous sponsor Joe Canda from Mobility Works and of course all of our philanthropic friends and family who stepped up to give so willingly of their own time and resources. The WALK event is such an overwhelmingly emotional experience every year when so many kind hearted people come together to support the MS movement but this year was extra special because so many of those people were my crew so I am beyond proud and grateful. I have organized and executed many big MS fundraisers over the years but had stepped away for a bit so the amazing success of yesterday's WALK MS surprised even me, restoring my faith that when like minded people gather for a common goal anything is possible. With so much good will and hard work put into helping those of us with MS, I can't help but believe that an END to this disease is very close but in the meantime I know that my friends and family care deeply about my well being and that is something no amount of money can buy.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.