MSA – An Easter Story

MSAThe Easter season is a time to acknowledge that Jesus died for all our sins, and to celebrate his resurrection and his transcending into Heaven to wait for us.  Almost like waking up on Christmas morning to find the entire world has been covered in a beautiful blanket of sparkling snow.  You stand there looking at it, reveling in the peacefulness, beauty and wonderment of it all.

Easter for me has always been a time for hope and new beginnings.  I am a strong believer that our lives are predetermined before we are born, and that God does not make mistakes.  That has to be the only explanation for how I am where I am today.

Let’s review a short history of my life.  I was born in New York and was turned out on the streets at a very crucial age, my early teens.  With those circumstances come bad influences and even worse choices made.  I was a mess.  I was an angry young man with huge trust issues and a dislike for the human race.  I had taken the position the world wasn’t fair, and it deserved whatever I could throw at it.

In the early 80’s I moved my Mother to Florida and soon after met the girl who would soon thereafter become my wife, Susan.  She was country.  I was city.  We had to both compromise, but one thing she wouldn’t comprise on was her idea of “paying it forward.”  I don’t know even to this day if there are too many New Yorkers who adopt this philosophy of life.  New York is a very fast-paced, everyone for themselves type of mentality.

When Susan met me, I didn’t trust anyone, wouldn’t sit in a public place with my back to the door, and never, ever spoke to anyone I didn’t know.  I know, that’s hard to believe knowing me now, but it’s the truth.  As the years moved on, Susan and I thought about where we wanted to live.  She was afraid of New York and its fast pace; I hated Florida and its heat and lack of seasons.  So we moved to Ohio.  Close enough to some civilization, but far enough from family to not have any interference with our lives.

Slowly, I started to meet people that I didn’t feel had hidden agendas.  I started making friends, talking to people and coming out of the hard shell I had built around myself.  I became the Commander of the Police Reserve Unit in Fairborn.  I became involved in local politics.  I started talking to citizens and found that many, like me had lost hope in life. MSA, Frank Cervone

I was very involved in my community, had my own business, repossessed tractor-trailers, and had been elected to a Council position where I could be the voice of the people.  Then October 13, 2008 came.  The day MSA decided to rear it’s ugly head in my life.  It was like it took everything I had, dumped it into a bag, shook it up, and dumped it out.  Some things were broken never to be fixed again; other things damaged but still useable, but definitely a life changer.

I could have easily reverted back to that person I had been.  Blaming everyone and everything for what bad had happened in my life.  I could have taken the news that I was dying and went home, sat on my couch wallowing in my despair, and waited to die.  But things had changed in my life and I wasn’t that person anymore.  Not to say this didn’t knock the wind out of my sails, because it did.  No one has the ability to change the situation they are facing, but they definitely get to choose how they react to it.

After the death of my brother, Robert, when I was eight, my family strayed away from the Church and I had lost all my faith too.  But, I can tell you, facing death is a very powerful way to encourage you to find faith, and we did with the help of the Maple Avenue Church of God in Fairborn.  After months and months of misdiagnosis, I went to the altar one Sunday and asked God to take the burden from me.  I knew I wasn’t strong enough to handle what was going on by myself.  And although this may sound cliché, I believe everything became clear to me in that moment.

There are approximately 50,000 Americans that have MSA.  There are no celebrities that suffer from it, or have a loved one that suffers from it.  Someone, somehow had to get the word out about MSA and I was the closest thing they had to a celebrity in this area.  I was a politician.  Newspapers will gladly fight over who will get the “exclusive” story of something happening to a politician.  So after thinking long and hard about it, I went public.  I knew that would be the end of my political career.  I knew I would have to change roles.  I would no longer be the “voice of the people”; I would become the “face of MSA.”  And you know what?  I’m okay with this.  This is what I am supposed to be doing.  Why else would my life have taken such a drastic change?  I was supposed to meet Susan.  I was supposed to shed my anger and mistrustfulness of others, I was supposed to listen to others, find what they needed in their lives and do what I could to help them.  I was on the mission God had planned for me all along.

So, with God’s plan in mind, it is no surprise to me that MSA Awareness Month is in March.  It is the Easter season.  It is no surprise that I met the Dayton Barefoot Runners and that each of them are very spiritual beings.  This is how it was planned centuries ago and we are fulfilling God’s plan.

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Frank Cervone at the fundraising event for MSA.

So, with that theory, we had the Dayton Barefoot Runner’s 2nd Annual Race to Find a Cure for MSA this past weekend.  Due to my connections in the community, the preparations for the race were hectic, but went very smoothly.  We watched the weather for days, keeping a sharp eye on Winter Storm Virgil, praying he would stay west of us until after the race.  We used advertising flyers, Facebook and radio interviews with Kim Faris of Lite 94.5 to get the word out about the event.

The race day came.  The weather forecast was perfect for running, and the sun came out to shine brightly.  We were concerned that the attendance would be lower than last year because we had moved our event up one weekend so that it didn’t fall on Easter weekend and we were going to be in direct conflict with two other very well known events.

To my surprise and delight, the turnout was tremendous!  Friends, fellow politicians and supporters came out to help me support and bring awareness to MSA!  Two fellow MSA patients, Dennis Jakeway and Marvin Rapenport were there to help me put a face on MSA.  Their caregivers, Dennis’ mother Sandy, girlfriend Heather and Marv’s wife Cathy were there to watch over the guys, but to also show support.  Mona Law drove across Ohio and John Standley, and Vickie Brewer drove in from other states to show their support.  Runners who have family members who have MSA were there as well as those who had lost their loved ones to this disease.  I can only describe it as a big MSA family reunion.

This year we did something a little different than we have in the past.  Runners like to run, but they sometimes are more motivated if there is a “cause.”  Most runners know someone who has Alzheimer’s, breast cancer, leukemia, etc.  Very few, if any can say they know someone who suffers or suffered from MSA, so we asked my daughter, Angelina’s boyfriend, Michael Boudreau to create a video of MSA patients, families and caregivers.  He did an excellent job on the video and we set the photos to a song called, “I Have a Dream,” which was written specifically for MSA by Wayne Brennen.  The video was titled, “Faces of MSA.”  It gave those attending that hadn’t seen the effects of MSA on a person, a quick insight to how devastating the disease is, and the faces of the family members left behind.

There didn’t appear to be a dry eye in the place.  It was very moving and I believe even the family members attending were moved and showed how proud of the battle their loved one fought against this horrible disease.  We have copies of the video that are available upon request for a small donation to MSA.

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Purple Balloons for MSA.

We had a wonderfully successful day.  We had some time to share stories, love and comfort to others who are in this battle with us.  We celebrated Dennis Jakeway’s 50th birthday milestone.  That was very special.  Every birthday a MSA patient celebrates is another blow to MSA.  We even, as has become a tradition, sent purple balloons to our MSA Angels at the end of the event.

In the beginning I mentioned Easter is a time of hope and new beginnings for me.  With this event, we were able to raise quite a bit of money to donate to Dr. Charles Ide at Western Michigan University.  You all read my article from last Sunday and the breakthroughs he is making in research.  With the money raised for MSA at this event and the donations others are making at my fundraising page, I have hope for a cure for MSA and a chance for new beginnings for those who are living MSA.

If you’d like to support MSA, you can make a tax-deductible donation to: http://www.firstgiving.com/fundraiser/HopeForMSA/frankcervonehopeformsafundraisingpage

Unlike some other places you donate to, 100% of the funds donated to Hope For MSA will go directly to research.  There are no administrative fees, no bank account balances to contend with, no salaries or overhead costs to take away from the funds received, so you can rest assured the money will be used wisely.  Please take a minute to donate whatever amount you can afford.  Every dollar counts!!

Easter Blessing for you and your families!

#MSA, #Ohio

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One Response to MSA – An Easter Story

  1. kay and Bob Strank on April 1, 2013 at 7:18 pm

    Frank,
    What can I say that I haven’t said before. You amaze me, I feel so faithless as a struggle with mere Arthritis and Diabetes. I can control to an extent what my diseases do to me but you have no control. There are medications to help me along the way, for MSA there are none YET!! Oh how we love you Frank, you energy inspires us and you build us up with your faith and trust in God’s perfect plan. Thanks for sharing.

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