Well March, which is MSA Awareness Month across the world has come and gone. From the beginning of my diagnosis, I have been very involved in bringing awareness as well as raising funds to find a cure for this terrible disease. Unfortunately, as time goes by, these activities take more and more out of me and I find myself leaning on others to help get the job done. My deepest appreciation to Susan and Angelina.
Once again for the third year, the Dayton Barefoot Runners sponsored a 5 Mile Run / 5k Walk. As in the past, we held the event in March. Apparently we had been very lucky with the weather cooperating with us the first two years, but with the weather in Ohio as unpredictable as it was, this year not only was running the 5 miles challenging for the runners, so was the weather. The day before the race was beautiful, sunny and in the 70’s. So was the day after. On the day of the run, we had torrential downpours and I believe the high was about 36 degrees. Horrible, horrible weather. But you know what warmed my heart? It was the supporters that show up, year after year, no matter what. It was the Bell family whose father Pat was honored last year. It was the Lehn family, who had ran before in support of their father, Dr. William Lehn, but this year ran in his memory and for whom the run was honoring. It was Melissa and Stacey who ran in memory of Melissa’s Father. It was attended by Mona Law in memory of her husband Paul, Bob Summers in memory of his wife Sue, and John Standley, in memory of his wife Mi Sun. And it was Dr. Charles Ide. Professor and researcher from Western Michigan University. The man we donate 100% of the proceeds of our efforts to fund his lab to find a cure for MSA. In this freezing, raining, miserable day more than 40 people actually came, donned on their gear, and ran for me. For their loved ones. For all those that have lived MSA. And do you know how I know they ran for MSA and not for themselves? Because at the end of the run, they just went home. They didn’t stick around to see if they had “won” their category. They didn’t wait to receive their medal. They ran and they went home. They had completed what they had come for. They had ran for MSA. (Side note: The winners in each category did receive their recognition as Key Sports was kind enough to mail the awards to the recipients.)
A new event we tried this year was a banquet held that evening after the run. It was hosted by Mimi’s Café and was open to not only the runners, but also the public. We felt that there are so many people that want to support our cause to find a cure, but like Susan and I, running 5 miles, or even walking 5k is more of a challenge than we can handle. Mimi’s Café went above and beyond to accommodate the menu specially chosen for the diners; and the staff could not have coordinated their timing any better. Other than us having a turnout larger than expected, which is not a bad thing, the event went off without a hitch.
In addition to the meal, diners were able to participate in a silent auction with items such as Longaberger Baskets, OSU, Bengals and Browns gift baskets, hand crocheted baby blanket, Dvds signed by one of the movie’s producers with certificate of authenticity, baking dishes, and dinner and movie packages. I’d like to thank Treasures, Bob Summers, Andrea Lehn Long, BD Mongolian Grill, Wal-Mart, Rave at The Greene, and Frank DeMartini for their donations to the event. The silent auction alone brought in $685!
Susan and I have had many discussions about the pictorial CD we presented at last year’s event which shows MSA patients prior to the disease, during the latter stages and their families and caregivers. It is a VERY moving presentation that we’d like to thank our future son-in-law Michael Boudreau for creating. It is graphic. It shows the devastation the disease does to the patient. It also shows those loved ones that are spending every second of every day caring for them, and those families that were left behind when their loved one passed from this life.
We decided that we will continue to show the video and will continue to add patients and families as the photos are sent to us. We don’t do it as a “shock” presentation, but as an informational one. With all the awareness campaigns and fundraising going on these days, some causes are easier to raise funding than others. It appears to be easier to raise funding for breast or lung cancer, heart disease, MS or any of those other diseases, because everyone knows someone who has suffered from one or more of them. But, for MSA, it’s much more difficult. Unless you are currently diagnosed or have lost someone from it, you’ve probably never even heard of it. You would be unaware of the thousands that die from it every year. And unfortunately we find that lack of knowledge results in lack of donations. We have decided, with the patients and families permission, to show the world the faces. To show the world that this disease causes the same pain, hurt and devastation to our families as all the other diseases do to theirs. There is just less of us. We have an “orphan disease.” But every single one of us with the disease, just as those that have preceded us, will die from it. There is no treatment. No chemotherapy. No radiation. No surgery. No hope. Just as those with the more common, well known diseases, our families will suffer the same feeling of loss and hopelessness. Just because we aren’t common, doesn’t make us not human.
The most special part of the evening was the presentation given by Dr. Charles Ide of Western Michigan University. We have, as other MSA patients and surviving families, attended many conferences and conventions about MSA and they all seem to have made their presentations from the same script. Dr. Ide is anything but a cookie-cutter type of person. And if you haven’t met him, I truly encourage you to make an effort the next time he blesses us with his attendance.
Dr. Ide was able to take all the medical, technical and laboratory data of MSA, and although you might not remember the difference between the alpha-synuclein and glia cell, his passion for the patients and families shined through any medical terminology barriers that might have been. During his explanation of the conditions of the disease you could see those that have been through it as well as those living it now shaking their heads in understanding. He also, in his presentation, was able to identify the equipment he was able to purchase from the donations we had raised in the past two years. I believe it is much more powerful for someone to actually see what their hard earned money they donated was used for and the positive outcome that was derived from it.
Dr. Ide was also most gracious to answer questions about his work and although he is not a clinician or medical doctor, was able to confirm symptoms families had seen in their MSA patients as things that were characteristic of the disease. Some even expressed, that although their loved one had already passed, they had a better understanding of the disease now than ever before. I believe everyone in the room left with a better knowledge of MSA and a fire in their hearts to do whatever they can to help bring about awareness and funding to find a cure.
On May 9, 2014, Doug Brandt of the Dayton Barefoot Runners, Susan and I made the trip to Kalamazoo Michigan to present Dr. Ide with this year’s donation. With the donation from the Marv Madness fundraiser held the weekend before ours, just us two MSA patients, our families, friends and supporters were able to raise $9,420. It was a little short of the $10,000 we raised last year, but much less than we expect will be donated in the future.
In a post event meeting with Doug, Trissa King, Brian and Emily Chriswell, and Joey Lawrence of the Dayton Barefoot Runners, we have decided that we are going to raise awareness throughout the year with several small fundraisers. We will kick off the fundraising in March with the Banquet, and of course we will still have the annual run, which will be scaled back to a 5K and be held in May in anticipation of better running weather, but we will be holding a variety of different events throughout the year still with 100% of the proceeds going to Dr. Ide and his MSA research.
We will be holding our next fundraising event on Thursday, June 12 at 7:00 pm. It will be a Paint and Wine event held at Raise Your Brush in Centerville, Ohio. The cost is $35 per painter and they will donate $10 of the fee to us. Please call them to reserve your place as space is limited. Their telephone number is 937-470-5487.
Then on July 7, 2014, we will be hosting Neil Versel as he bicycles from Chicago, Illinois to Washington DC to bring awareness to MSA. More information with be available as the schedule of events is firmed up.
Thank you to all of you that supported the events or made donations to Hope For MSA. You will never, ever know how much that means to a family living with MSA.
I am going to try to write more often just to check in with all of you. My articles may or may not always be about my life with MSA. I will be dabbling on local and national stories of interest. I hope you all enjoy them and as always, please feel free to leave your comments on the site.