Heading to the Slammer - To Get Kids Out of Prison

                There are two basic reasons why I, or anyone else, support an organization like the Muscular Dystrophy Association.  And, basically, it is the two general purposes they serve.  First, I want to support those individuals of all ages currently living with neuromuscular disease who need unique and expensive equipment and services to live independently and be as healthy as possible.  Also, I want to see the research being funded and facilitated by the MDA yield cures for those diseases so that those individuals can declare victory in a world where no one else has to suffer them.

                As I have written before, the blessing of my son’s good health and his ever-growing level of activity has served as a constant reminder of the goals of the MDA and the reality they seek to create for all children.  While I know that he could, one day, be diagnosed with one of the diseases that MDA combats, he is currently far from limited in his mobility.  One of the reasons I like supporting the MDA in my little way each summer is to help them create that future in which muscle disease doesn’t limit any child.  Before Joey was born, however, I had another child to inspire me on that mission – and she has some limits that Joey does not. 

                My second year as a jailbird, 2010, was the summer that things started coming together in my participation in the Lock-Up.  I started raising money earlier, built a strategy for seeking donations in various ways, and learned more about the specific ways that the Muscular Dystrophy Association serves those with muscle disease.  However, it was at the event itself that year that my heart truly glued itself to this organization and its mission.  In 2009, I didn’t get to stay at the event very long and did not get to meet the attending local patient, which the MDA Nashville folks usually bring in to serve as host for the day.  In 2010, that was not the case.  As I entered Fleming’s Prime Steakhouse (a fabulous restaurant near Vanderbilt University) and “turned myself in,” I was greeted by an adorable little blond girl named Emily.  Emily was dancing and skipping and wearing the brightest smile.  She, I assumed, was not a muscular dystrophy patient.  For the first few moments, I figured she was the child of another jailbird or an MDA staff member.  As I took a few steps in and around a dividing wall, I saw that Emily was leading me toward her older sister Sara.  Sara, who was 7 or 8 at the time, was our local MDA Goodwill Ambassador and hostess for the day.  Like her sister, Sara was an adorable blond girl with an unstoppable smile.  Living her entire life with Type 2 Spinal Muscular Atrophy, Sara and her family were very familiar with the services provided by the MDA.  Sitting in her electric wheelchair near the jail bars where each Lock-Up participant took a fun photo before hitting the phones to raise money, Sara and Emily were greeting all the jailbirds and thanking them for their support.  When I first approached them, I froze for a second.  All my life, I had seen Jerry Lewis featuring kids served by the MDA on TV and knew the title of “Jerry’s Kids” to represent those who needed the help of the MDA because they couldn’t enjoy all the things in life that many other children do.  But, now one of “Jerry’s Kids” was right in front of me and she and her family needed that continued support to deal with a rare affliction that I couldn’t begin to understand.  Also, she had a younger sister who had never known a reality beyond helping her sister with things that Emily (and me and Joey and countless other kids) could easily do.  I stopped myself from getting teary-eyed and walked toward Sara with a smile.  They, and kids like them, were the reason I was there and the reason I would keep coming (still are!).  I knelt down to chat with Sara while awaiting my turn at the “photo-bars.”  She was a charming little girl who seemed to have a very positive attitude.  Little Emily, at only 4 or 5 years old, was obviously very supportive of her big sister and enjoyed being an entertaining part of the day for all of us.  After speaking with them for a few minutes, I felt so proud that they were sharing their lives so that the rest of us would better understand the importance of MDA’s work.  To be so young, they seemed to really feel a part of the mission.  I asked if I could get a photo with them before I went to my table.  They gladly agreed, and one of the MDA Nashville team members took my camera and made the picture. 

Five years later, that photo is on my desk at work as a year-round reminder of one of the highlights of my summer and of two of the greatest inspirations for why I and many others go “behind bars” to raise funds to put an end to neuromuscular disease.  I have included it in letters and e-mails that I send during my fundraising period each year since, as I have with some other photos from Lock-Ups past.  As much as I treasure each memento from my times “behind bars,” that picture is still my favorite.  In the picture, little Emily smiles like a movie star while holding Sara’s hand to remind the world that she will take care of her big sister and do everything she can to fight for a cure.  Sara smiles with the pride of being the one MDA patient chosen to visit the Lock-Up as a local Goodwill Ambassador and with confidence that what we did in that room that day was to support her and other kids like her.  I’ve seen Sara and heard from her family in the years since that day, but that first meeting will always be one of my most vivid memories and greatest inspirations as a jailbird. 

It is appropriate that the Muscular Dystrophy Association uses a Lock-Up format for one of their fundraisers.  Muscle disease is a prison that people don’t deserve and a sentence that must end.  Let us who have any ability at all do what we can to help break those prison bars for them.  As I post this, I have one week remaining until the 2015 MDA Lock-Up.  I don’t know if I will see Sara and Emily there this year, but I will still be there on their behalf as I always am.  Please join me by contributing what you can right now to the important work that helps Sara stay healthy, will help her live independently as she gets older, and allows her family to learn and do more to help her.  Your gift is tax-deductible, and my bail-raising website is a secure avenue through which to give.  You can also contact me directly to make other arrangements.  Will you help blast the prison open now?  You know the fight.  Now, be one of the fighters!

http://www2.mda.org/site/TR/Lock-Up/LockUp2015-National?px=2212926&pg=personal&fr_id=19900  

Heading to the Slammer - For All the Right Reasons

                The Muscular Dystrophy Association does a great job of keeping us jailbirds motivated during the weeks building up to our annual Lock-Up event.  Some years, they distribute personal letters from folks living with muscular dystrophy or from the parents of children who live with some form of muscle disease.  It’s great to hear from the individuals being helped by your donations and, with each letter, I feel more knowledgeable about the vital work being done by an organization I have come to respect and cherish.  Here, I want to share a bit from some of those letters.

                In my first Lock-Up post of this year, I mentioned my new friend Nancy who called me before the 2014 Lock-Up and introduced me to her service dog, Wilson, at the event itself.  From her pre-Lock-Up letter:

 

                                "I have had Muscular Dystrophy since I was an infant.  Growing up with MD, the highlight of my youth was attending summer camp.  As a child attending a camp where everything centered around being able to participate in all activities it was very special.  I remember wheelchair baseball, basketball, swim, fish and even riding in a hot air balloon!  If I could still attend summer camp as an adult I would be right there.

                                MDA also has a clinic at Vanderbilt where I see doctors and a vocational rehab counselor.  They help me come up with new ways to do my daily activities, get necessary equipment and helped me fill out paperwork to get my service dog, Wilson.  Fortunately MDA has funds for batteries and tires for my wheelchair."

                From Julie Rutter here in Nashville, whose precious daughter, Emily (her smile makes you think of a Shirley Temple film), has a form of MD, I received a heart-stirring, thought-provoking account of a family walking into a whole new world:

                                "Spinal Muscular Atrophy (SMA) is a progressive neuromuscular disease currently with no treatment or cure. Emily has never crawled, never stood up and never walked.  But cognitively she is ahead of most milestones and, as she grows older, is increasingly aware of the way her physical abilities are different from those of her brothers and her friends…."

                                "The Muscular Dystrophy Association has helped us navigate our new reality.  They provide clinics with access to top-notch medical professionals.  MDA also offers support groups and an equipment exchange to help with the vast array of specialized equipment that is often not covered by insurance."

                I had not heard of a pair of patients of neuromuscular disease within the same family until I received my letter from Bridget Sarver of Mount Juliet:

                                "Both my husband and son are part of a clinical study for their condition Charcot Marie Tooth which the MDA is helping to fund the research on as well as paying for their visits to the MDA Clinic.  Most importantly in my eyes is my son Thomas’s trips to MDA Summer Camp annually, at no cost to my family.  Summer camp gives my son time to meet with other children and teens who are going through the same things he is facing.  He has been to three different camps in three different states and he has met a lot of individuals who are battling with multiple forms of Muscular Dystrophy as well as doctors and volunteers in a controlled and relaxed environment."

                These families, and so many more like them, are reason enough for me to “go behind bars” every summer. Heck, for these folks, they could put me in a real jail for a while if it would end the bondage of muscle disease. They are also reason enough for YOU to open your checkbook a little, and your heart a lot, to support the amazing efforts of the Muscular Dystrophy Association. Every dollar helps and is well-spent. Give what you can now so that, one day, the letters will say “We won!” Join the charge to victory TODAY!

http://www2.mda.org/site/TR/Lock-Up/LockUp2015-National?px=2212926&pg=personal&fr_id=19900

Heading to the Slammer - In the Beginning...

                This morning, Joey and I visited the MDA Nashville office to drop off a couple of checks that I acquired over the weekend in support of my Lock-Up bail.  While we were there, my “parole officer” introduced us to some of the Volunteer Recruiters whose job it is to reach out to folks seeking their involvement in the Lock-Up and other MDA events.  Rachael asked me to tell them why, in 2009, I said “yes” when one of their past counterparts called me.  I told them that, unfortunately, I did not recall who the person was on the other end of the phone, but that I was so glad they called me and that I said “yes” that day.  I told them that the caller shared that someone had told the MDA that I would be a good person to contact to participate in the Lock-Up.  I did not learn the identity of that “someone” at the time and still do not know who “turned me in” to be locked up.  If they ever read this blog, let it stand as a big “thank you.”  I’ve enjoyed every bit of my involvement.  As for my reason for saying “yes” at the time, I simply shared that the person who called me conveyed a level of simplicity in the fundraising process.  That was important, because there were few weeks left before the Lock-Up event when I was originally recruited.  The easy usage of a personal bail-raising website with a link I could e-mail to others or post on Facebook appealed to me.  I told the Volunteer Recruiters that my gears started turning during that initial call and that, while I didn’t execute them quickly enough, plans were cooking to fuel my first summer of MDA fundraising.  It had also been two or three years since I had been involved in any significant philanthropic work, and I was missing that connection to a worthwhile cause.  I had done some events and activities in support of St. Jude Children’s Research Hospital from elementary school through college but hadn’t linked with it in any way since moving to Nashville.  I rambled on a bit more about the experience I’d had each year, too.  But Rachael’s question got me thinking more about the real origin of my involvement with the Muscular Dystrophy Association.

                While I had planned to write some thoughts about this deeper origin today, it was ironic that Rachael would ask me to address “the beginning” this morning with folks who are working hard to bring more jailbirds like me into the fold.  Now, I want to go a few steps beyond that first phone call and share what has drawn me closer to my experience as a jailbird.  While it took me a few years to piece all of this together, it makes that initial “yes” and my pattern of the MDA automatically being part of my summer make so much sense.

                The initial phone call that the MDA Nashville staff and I discussed this morning came in late May or early June of 2009.  At that time, I had very recently seen my Granddaddy, Vernon Rhodes, alive for the last time (Mothers Day of 2009).  We would lay him to rest a few days later in mid-May.  While I was, for the most part, at peace with his departure from this life to one far better, there was a new hole in mine.  Not consciously seeking to fill it, I think Granddaddy may have inspired me to do so anyway.  I had never been involved with a lock-up-style fundraiser before.  However, I had some vague understanding of it, because I knew one person who had – my Granddaddy.  In the late 1990s, he participated in a lock-up fundraiser in my hometown of Lexington, Tennessee supporting St. Jude.  I believe he did it a few times, but I distinctly remember one year (maybe ’97 or ’98) when I saw the fundraising letter that was sent to my parents on his behalf.  I also remember seeing the picture of him “behind bars” and thinking that it was a fun set-up.  Granddaddy and I talked about how it went in the days after, and I believe he raised several hundred dollars for St. Jude (another amazing cause) that day.  Back then, such events didn’t see as much pre-emptive fundraising, and most folks sought donations in the last few days before the event.  As a well-respected man in our community, leader in our church, and retired businessman with (as far as I ever knew) a flawless ethical reputation, he was a prime target for such a fundraiser.  Call everyone you know and bring in as many dollars as you can.  That’s the philosophy and practice behind such fundraisers.  It works, too.  You just need to have fun with it.  My most distinct remembrance of his participation, though, is in the form of a mug they gave him filled with candy and a few other small items as a “thank you” for participating.  I remember it well because he gave it to me (and maybe some of the candy).  The mug became the pencil cup on my desk at my parents’ home and, even after moving before my senior year of high school, it still is and sits on that desk in Lexington today. 

                Though not a fundraiser for St. Jude, perhaps the Muscular Dystrophy Association was meant to offer me that opportunity at that time to give me an added ounce of linkage to my Granddaddy’s legacy.  Beyond many other great attributes and lasting lessons he taught me, he was always a very giving and service-minded man.  As a long-time member of the Lexington Lions’ Club, he enjoyed the fellowship of the club but took its service and charity work very seriously.  He knew the mission and made it a priority in his involvement.  That same example emerged in other charities with which he helped. 

                I wish my Granddaddy could laugh at me behind the MDA’s jail bars.  I know he would get a kick out of it.  But, I also think it was my turn to “take over the cell” after he left this world.  While none of the Rhodes musical talent made it into my makeup, I treasure every connection to my Granddaddy that I find in myself.  In this case, I think the connection found me.  And, it all started with a friendly phone call from the MDA in the summer of 2009.  I’ll go behind bars for as long as I can with the MDA, and I’ll always appreciate the inspiration of the man who was the first jailbird to me.

                Donations have already been made in Granddaddy’s memory this year.  If he were here, he would be the first to join me in supporting the MDA. Will you join us now, too?  Is there someone in your life who always gave of themselves when they could?  Give in their honor or memory today.  It will even give a little back to you, because your contribution is tax-deductible.  Please, help us find cures to neuromuscular diseases and help us serve those living with these ailments every day.  What would your Granddaddy do?  My jail sentence will be carried out in one month, but you can join the breakout today!

http://www2.mda.org/site/TR/Lock-Up/LockUp2015-National?px=2212926&pg=personal&fr_id=19900

Heading to the Slammer - Because We're Not All Doctors

                Last Thursday, my son gave me a simple, yet powerful, reminder of why raising money for the Muscular Dystrophy Association is important for me to do.  Naturally, Joey did it in his blunt, funny, innocent three-year-old kind of way, but he really got me thinking and further inspired me to try to help the folks that the MDA serves in the limited ways that I can. 

Though I was participating in MDA’s Executive Lock-Up three years before he was born, having Joey in my life added a lot of inspiration and perspective to this activity each summer.  From rolling over to crawling to walking and now being all over the place in a split second, I have witnessed my son’s mobility enhance at many levels over 3-and-a-half years.  As each Lock-Up came around after his birth, that got me thinking more seriously about the fact that many individuals served by the MDA either didn’t make it to the levels that Joey has or their physical abilities declined at some point in life.  That’s a problem that must be addressed.  That is also why I admire the fact that the MDA funds and facilitates BOTH research for treatment and prevention AND resources and activities that help patients of muscle disease do as much as possible in spite of physical limitations.  They address all sides of the challenge.  However, beyond that added inspiration to see others able to be as active as Joey, he has added his own personal brand of philosophy to the mission.

While most of the donations that we “jailbirds” receive is through a Lock-Up bail-raising website, we also take cash and checks directly.  When I receive donations that way, I try to deliver them to the Nashville MDA office as soon as I can.  Over the last two years, I’ve taken Joey there with me on a few occasions, and he has always been a big hit (of course!).  The last time I was there, my “parole officer,” Rachael, insisted that I bring Joey the next time I visit.  Ask and she shall receive!  (The local MDA office is also located between our home and Joey’s daycare.)  When Joey and I left our home last Thursday morning, I told him that we were going to visit some of our friends.  He asked me who it was, and I told him that we needed to take some money to Miss Rachael and that she was looking forward to seeing him because she hadn’t in a few months.  We got in the car, turned on an Elvis CD, and started driving toward Brentwood.  With a Joey-style series of questions, he got me thinking a bit deeper about my forthcoming “time behind bars.”

Joey:  Where are we going, Daddy?”

Me:  We’re going to see Miss Rachael at the MDA office.

Joey:  What’s a MDA office?

Me:  (pausing and thinking of how to explain this in 3-year-old terms) Well, the MDA helps people who are sick with diseases that cause them to have trouble walking or moving around like you and me.  It’s a disease called muscular dystrophy.

Joey:  Oh….  But I’m not sick.

Me:  No, you and I don’t have muscular dystrophy.  But some people do, and it makes some things tough for them.  The MDA helps those people go to the doctors they need and get the equipment that helps them move around and play.  But, all of that costs money, and we try to raise money each year to help them pay for all of that.  Today, we’re taking some of that money to Miss Rachael.

Joey:  Oh, ok.  That’s good!

                Knowing that I had probably gone too far and gotten a little too deep, I waited for the inevitable follow-up question or simply a whole new topic.  Joey didn’t say anything for a couple of minutes, but soon picked up where he left off as we were about to turn into the parking lot.

                Joey:  Is Miss Rachael a doctor?

                Me:  No, Miss Rachael isn’t a doctor.

                Joey:  (emphatically) Why?

                Me:  (laughing) I don’t know.  Am I a doctor?

                Joey:  No.

                Me:  Well, why not?

                Joey:  Because you’re not.

                Me:  Ok, well, Miss Rachael isn’t a doctor either.

                Joey:  But, why?

                Me:  I’m not sure, son.  But you should ask her when we go inside.

                Joey:  Ok.  I will.

                When we entered the office, the MDA Nashville staff was hard at work preparing for some of their many summer activities.  Everyone stopped to chat with Joey, and I turned over the donation we had come to deliver.  Though talkative in the car, Joey switched to his slightly shy mode inside amongst the group.  Rachael charmed a few lines out of him with her enviable energy and positive personality, but Joey never came out with “the question” of the day.  After a few minutes, I asked “Joey, weren’t you going to ask Miss Rachael something?”  He wouldn’t budge.  I tried a little more, but finally told her myself that Joey had asked if she was a doctor and then asked why not when I told him that she was not.  Rachael knelt down in front of him with a smile and said, “Well, I guess I’m a doctor of fundraising!”  Joey didn’t ask what that means and didn’t immediately start comparing types of doctors, but he seemed to like her answer.

                As we drove away a few minutes later, I simply followed everything up by saying, “So, I guess Miss Rachael is a kind of doctor, isn’t she?”  To which Joey just replied, “Yeah, she is.  I like the MDA office.”  I told him that I do too and that we would be back there before long.  Joey is in a phase now where he knows when we are close to a place with which he is familiar, and he wants me to be sure to pass by it or point it out to him.  Twice already since that visit, he has made sure that I show him when we pass the Nashville MDA office.  After church on Sunday, just before reaching that section of Old Hickory Boulevard, he pointed to four different buildings and asked, “Is that the MDA office?”  When I finally pointed out the real thing as we passed it, I heard a loud “Yay!” 

                Maybe Joey will be helping the Muscular Dystrophy Association in some direct capacity someday.  Until then, he helps my small efforts a lot.  In this case, he reminded me that, as much as I would like to cure neuromuscular disease – I can’t.  But, just because we’re not all doctors or scientists, we can all find our ways of helping.  For the last seven years, mine has been to raise a few dollars to fuel the efforts and fund the people who, I believe, will one day end this plague.  So, if Joey ever asks why we jailbirds raise money, I can simply say, “Because we’re not all doctors.”  Whether you are a doctor or not, I hope you will join us.

Heading to the Slammer – Give Me A Ring, Drop Me A Line, Get the Dogs Barking

                Two months from today, I will go “behind bars” for the seventh time in support of the Muscular Dystrophy Association as part of their annual Lock-Up fundraiser.  As the clock counts down to my sentence, I want to share some of the experiences I’ve been blessed to have as I have come to understand the work of the MDA and the reasons I continue to participate in this fundraiser.  Naturally, as I share these tales, I ask each of you reading (and your friends and their friends…) to go to my Lock-Up website and give what you can.  I am not out soliciting to major donors only (I’ll take those too!).  I am reaching out to everyone who will invest some dollars to a cause that makes a lot of sense – helping people live as independently as possible.

                Today, I want to share with you about Nancy and Wilson.  In the weeks leading up to last year’s Lock-Up, the Nashville MDA office provided the contact information of us “jailbirds” to some of the individuals being served by the MDA in our area.  I was so happy to hear from some of them and learn more about what the MDA does for them.  Nancy was one such individual who sent me a personal letter during the early days of the 2014 fundraising period.  While we often think of the MDA serving “Jerry’s Kids,” we must also remember that those kids grow to be adults.  The MDA serves people of all ages, regardless of when they were diagnosed with a neuromuscular disease.  Nancy has seen the MDA at work in her life for several years, having been diagnosed with muscular dystrophy as an infant.  Now an independent adult, she wrote to me about the equipment and services she is provided (much at our own Vanderbilt Hospital) and some of the activities that made her childhood with muscular dystrophy an easier experience.  As last year’s Lock-Up got closer, Nancy gave me a call one day while she was volunteering at the local MDA office.  It was a first for me.  I had met some of the individuals and families at the actual Lock-Up events over the years, but none had ever called me.  It was such a pleasant surprise and made me tear up in the middle of my office.  Nancy told me more about her situation and the valuable help provided by the MDA.  She reminded me how important each dollar raised is and how important it is that we equip every individual and every family that must deal with these diseases.  I hung up the phone feeling an extra charge for the work to be done (click here to join in that work) and newfound devotion for one more person who I know needs our help.  When I arrived at the 2014 Lock-Up, I received the best surprise of the season – Nancy was there in person!  But, she wasn’t alone.  That day, I also met Wilson.  Nancy had mentioned him in her letter.  Wilson is Nancy’s service dog – a beautiful white lab who helps her inside and outside her home.  He was so sweet and friendly and was almost as strong an ambassador as Nancy herself.  The two of them make a great team, and they remind me that helping folks with serious diseases like muscular dystrophy is indeed a team effort.  I am glad the MDA made me a small part of their team.  As much help as Wilson is to Nancy, she and many others like her still need the MDA’s help to maintain their wheelchairs, cover the high costs of regular treatment, and provide other equipment and services that the rest of us often don’t understand.  Likewise, the MDA needs our help to make all of that possible. 

                For Nancy and the many others I have come to know over the years with neuromuscular disease, and for the many others I have never met, I ask you to support my bail-raising fund to help the Muscular Dystrophy Association in their mission to end neuromuscular disease.  Each donation is tax-deductible, and you can even post it in honor or in memory of a loved one.  My website is secure, but I can also accept your contribution by cash or check.  E-mail me at prez_chucko@hotmail.com if we need to arrange that.  Let’s make a muscle and make a difference TODAY!