Daylight Savings Time

Thank Goodness, Daylight Savings Time recommenced this last Sunday! On Monday afternoon, I took my work commute home, ran an errand, dressed down, hit high points with my loving wife of four decades, and still had about a half hour to sit on our westward facing front porch and enjoy a beautiful sunset. Wow, talking about a remarkable attitude adjustment!

And, the relevance to curing Duchenne, you ask? We need an Ah-ha moment … an epiphany in the lab that breaks the evil code without the body rejecting whatever is introduced into the genes to fix the muscle degrading fatal disease.

Alexander Graham Bell surprisingly hearing his assistant Watson’s voice for the first time over a transmission medium; the first American adventurer to view the south rim of the Grand Canyon from the Colorado River well below; that lucky day in 1942 when U.S. fighter bombers surprised the Japanese fleet in the Pacific and, in less than 2 hours, basically turned the tide against the naval power of an evil empire in less than four months following the attack on Pearl Harbor; Dr. Salk’s discovery of a curative vaccine to children’s Polio; the discovery of T-Rex bones in Montana; a quickly discovered and efficacious vaccine to combat the worst effects of COVID-19; and, yes, each and every live birthing of a baby … each an epiphany, or, are they?

Take a look closely at each of those examples and any other similarly phenomenal enlightenment. Each followed and was the result of a lot of work and risk taking. The cure or at least mitigation of rare diseases such Duchenne are no different. Just look at all of the brain power and tedious lab work that led to a cure for Polio in the 1950’s. Smarts and sweat can lead to the end of Duchenne.

My most steadfast hope and daily prayer is that the epiphany for a cure to Duchenne becomes as abrupt and life changing as something as foolish as a country’s seasonal time change.

Kindly yours,

Papa in Franklin

Duchenne and Ukraine

Like the rest of the world, I have been riveted to the murderous saga going on in Ukraine. The Russian president has earned an inglorious spot in history as an evil despot. The intentional bombing of homes, hospitals and nurseries hurts me the most.

The consequences of an unnecessary invasion are so unjustified. So is Duchenne, the dream killer.

Evil arising from power and godlessness and DMD have parallels. Each can be unforeseen. Each is rare but far too common. Each painfully costs lives. Each punishes families. Each should be avoidable if only the right commitment was made to find and implement better alternatives.  

I am confident that evil in Europe will lose, again, but only at great cost to us all. It will be worth it in the end.

As for Duchenne, a cure is not so certain, at least in the foreseeable future based on past research and medical results. Nonetheless, we cannot quit fighting for our freedom from such dreadful rare disease.  

The Russian attack is being met with measured sanctions and force. With DMD, we should embark on a full court press without worrying about measured incremental steps to a cure. It is time to swing for the fences with respect to ending Duchenne. 

Like the Ukrainian president, let’s us DMD constituents stand tall, be vocal, not accept moderate efforts at success, and out tough evil. Freedom comes in a variety of Life’s packages. Whether defending a military invasion against a peace loving people or a quest to stop a rare deadly disease like Duchenne, let’s not impede the solutions with measured responses but rather bring to bear all available resources to overwhelm the evil enemy.

The good fight needs a more forceful counter-punch. Whether Putin’s mad ambition or the devastation of Duchenne, let’s make sure that might makes right in favor of Good.

Kindly yours,

Papa in Tennessee

Looking Back To Find The Future

Just finished reading a book given to me as a gift by my youngest daughter. The Extraordinary Life of Sam Hell was a good Sunday’s read.  

It is a fictional but very believable account of a young man born with a genetic abnormality, ocular albinism, that causes him to have red pupils for eyes. He is confronted by insensitive schoolmates and judgmental teachers in his Catholic school and is called “Devil Eyes”. However, he was the brightest student and did find solace in new and lifelong friendships with Ernie, a likeable African American who went on to be a sports jock and with a spirited gal friend who had few unexpressed thoughts.

Sam Hill, also known as Sam Hell, was not good with girls and, so, he had to be “taught” along the way to manhood. However, it was not until his father had a stroke and Sam had to keep the family pharmacy going that actually turned him into a man. After getting his mother on firm ground running the store, Sam went to college, became an eye doctor, returned home for awhile until tragedy struck, then started a bit late on a Life’s journey to discover what is really important.

Author Robert Dugoni’s premise is, “There comes a day in every man’s life when he stops looking forward and starts looking back.” At first, I thought that was a surrender to aging or thinking old which I resist. But, upon reconsidering Sam Hell’s life and what he did after no longer looking forward but rather relying on what got him there in the first place, I now realize that reflecting on our past, good and bad, does indeed help us complete our lives, in whatever direction we are looking.

I have been critical of past efforts or lack of successful effort to find a cure to the dream killer that is DMD. Such criticism has served to vet frustration over my beloved grandson’s unfair genetic and lethal condition. I will retain some of that skepticism but am rededicating my attitude towards looking forward, having learned from the past … sort of a pivot from the Life navigation of Sam Hell.

Looking forward, I ask those constituents involved with DMD who are equipped with doing something positive about it not to tread old ways but rather to venture out into new thinking and techniques, to think out of the box, but at the same time to revisit old data and former results of clinical trials to see if perhaps we missed something … some clue that, if cultivated with today’s technology, may pave the way to new findings for a cure or, at least, life changing mitigation.  

Like Life itself, Duchenne research does not have to be linear. It can be circular … in concentric circles. Each spiraling ring can take us further out but closer to the solution as the rings of experience and lessons learned expand. What in the Sam Hill, we just may be able to cure Duchenne in the near future by learning more from our past!

Kindly, Papa,

Franklin, Tennessee

Pondering

Just enjoyed a wonderful weekend with my family, including my 3 grandchildren. DMD grandson Hayes is still entirely ambulatory and active … with a curious mind. 

The older granddaughter is a lovable live wire who gives new meaning to being independent minded. She loves the grandson ... her “cuz”.

Then, there is my youngest granddaughter. At nearly 15 months old, she exhibits a healthy balance between calm and adventure. My favorite moments are when she ponders.

It is so much fun to watch her study a person’s actions or some activity.  She studies the subject. She thinks before acting on a new adventure. 

When she makes eye contact, it seems that she is probing my mind or, pondering my relevance to her. An irresistible smile signifies approval.

Last evening, I spent extra time re-studying the basics of gene development and how that can go haywire. The revisit caused me to ponder … how many “brain hours” have been expended on finding a cure to Duchenne? Answer: Not enough.

I am blessed to work for a world class sales organization. I have heard sales reps talk about their “windshield time” traveling from one prospective customer to another, thinking or pondering about the best pitch to make with the next opportunity.

I would hope and ask that lab researchers, geneticists, and medical specialists spend more of their windshield time just pondering possibilities of finding a cure to Duchenne. No doubt some do, on a regular basis.

Thomas Edison once explained that many of his best inventive ideas came to mind moments following the end of the numerous catnaps he would take at his work bench. Fresh looks at Duchenne may not hurt.

More pondering may lead to smart researchers engaging in deeper out-of-the-box thinking which may lead to new efficacious results.

 At least worth pondering about!

Kindly yours,

Papa in Franklin

Olympians

Watching the winter Olympics in China and constantly impressed with the athletes and their x-factor.

The athletes earning my most respect are the paraplegic Olympians. The back stories about what they have gone through to overcome terrible accidents or disabilities to compete on the world stage … wow … truly inspirational.

Unlike the young people with Duchenne, the paraplegics get stronger the more they work. The Duchenne-afflicted are getting weaker, regardless of how much they work.

All the dedication in the world will not rid their bodies of the dream killer … unless it is the renewed and sustained dedication of the researchers, clinicians, doctors, and funding sources that remain totally focused on curing, or at least mitigating, Duchenne sooner rather than later.

Idea: What if we conspicuously notice and reward the Duchenne warriors in the labs, non-profits, and medical facilities who are going the extra mile to cure Duchenne. Name them. Rate them. Explain their good work in normal terms. Celebrate each breakthrough, no matter how small it may seem at the time.

Encourage the public to follow progress in research. Teach the basic science in secondary schools. Have young folks with Duchenne speak at assemblies. Tell folks what we need most … prioritization of research and funding.

Duchenne constituents … take the top podium. You deserve it!

Kindly yours,

Papa in Franklin

Science vs. Profit

Earlier this week, I was giving legal advice to an experienced recruiter for executive and technical placements. She has experience in the life sciences and inside knowledge of how sound lab work tested by competent clinical trials have helped people with various diseases. She knew about Duchenne but had no direct involvement with DMD.

The headhunter reaffirmed that the scientists and technicians in the labs with whom she is acquainted remain exceedingly committed to fighting the horrendous effects of rare diseases. Of course, I as a Duchenne constituent want more … a cure rather than mitigation.

 It was interesting that, without any prompting or editorial comments from me, the talent acquisition insider voluntarily offered that, yes, pharmaceutical companies play an important role although they do bring upon themselves a lot of earned criticism for overstated expectations of new product roll-outs and profit greed, time and time again.

The dedication to science and sometimes the idealism of researchers as contrasted against the profit motive of Big Pharma has been self-evident, at least in the U.S. and some advanced European countries for generations if not more than a century. It will not end, due to Human Nature, at least as long as autocratic governments keep their hands off human inventiveness and capitalism … which may or may not remain the case in our children’s lifetimes.

Operation Warp Speed led to COVID vaccines becoming available within an amazingly short period of time despite the uncertain scope and nature of the pandemic. The cause was flooded with public funding which, in turn, allowed Big Pharma to hit a home run with efficacious vaccines in exchange for a pot of gold in return.

Will Duchenne get that much prioritization? Probably not. There are more than enough dreadful rare diseases with catastrophic results to sap funding sources. Too much disease and too few dollars … even publicly-funded dollars.

So, how does our Duchenne community fight the good fight with respect to encouraging scientific knowledge to trump profit just enough to deliver a cure to Duchenne? Keep ringing the bell. Educate, even pester, political financial appropriators. Find political leaders and captains of capitalism who understand that they could make a very real difference towards a cure for Duchenne if they targeted research spend more wisely.

Meanwhile, we DMD families must continue fighting the good fight on a child by child basis which, in the end, may do far more good for the Duchenne afflicted than gobs of money. At least, let that be our prayer.

Kindly yours,

Papa in Franklin

Mentor

Webster’s dictionary defines a “mentor” as a trusted counsel or guide.  We each need a mentor to help us avoid reinventing the wheel during our lives and to give us some balance.

On December 11th, I lost my mentor in the practice of Law in Tennessee. Tom was over 80 and not in good health. Nonetheless, word of the loss was unexpected, at least by me.

Upon hearing the bad news, I went into action to make sure former work colleagues were made aware so they could make arrangements to attend the funeral or otherwise extend sympathies to his wonderful family. The funeral was well attended at an old church in an authentic service that was led by a priest who said my colleague mentored him and not vice versa … I believe that since my colleague was so authentically kind, and insightful of human nature. As a lawyer with 50 years of experience, Tom used to say, “As long as there is human nature, there will always be a need for lawyers!”

It is Christmas time. We have mentors in the Duchenne community.  Their mentoring is a great gift to us who have much of the journey in front of us.

Sharing parents of one or more Duchenne children are the best source of perspective. The leaders of the few non-profits that make a difference certainly help.

The leadership of for-profit pharmaceutical companies, well, maybe not so much.

God bless the hard and smart working lab clinicians who are the point of the spear with respect to identifying scientific opportunities to cure or at least significantly mitigate the horrible experience of Duchenne.

Senator Marsha Blackburn and other national lawmakers are focused on budgeting public funding towards ridding Americans of rare diseases that are dream killers. Duchenne is among those targets. More needs to be done.

To my former partner, friend and mentor … thank you for your kindness, humor and wisdom and may your soul rest in peace (as I know it will).

To those fighting Duchenne, let’s identify, even become, mentors for the cause of curing Duchenne and make future Christmas observations even more appreciated.

Kindly yours,

Papa in Franklin

Thanksgiving

Authentically giving thanks as 2021 wraps up seems to me to be a bit of a challenge, personally.

The personal toll and public acrimony surrounding COVID-19 and its variants. The changing workplace with less rapport. Generationally high inflation that is sending the price of consumer goods sky high when earnings are not keeping up. The rising cost of health insurance with fewer options. Fires. Floods. Meanness on the airways and along the by-ways. Impatience. Anger. Frustration. Good grief, what is going on?

Juxtaposed are the virus break-throughs, folks adapting well to remote work, smarter shopping, greater access to good health care, serious discourse over global warming, kindness when least expected, hope for a better tomorrow and so forth.

Duchenne research has picked up now that labs are staffed again. Another trial is exploring genetic repair from a bit of a different angle. Ambulatory patients are living longer. There is greater awareness by the public in general (thank you, firemen, with the boot campaign in September).

For my grandson with DMD, he has just been asked to teach his first grade class about the solar system, using a Power Point presentation. How impressive is that! His muscles may not be great but his mind is immensely bright. And, he is a lot of fun to be around, to boot!

Those early Pilgrims certainly survived a lot of near death situations but did survive, nonetheless, with the help of God and native neighbors. One thing is sure about blessings … one does not know when the next one is coming around the bend.

So, yes, I will give thanks this season, not necessarily for life as it has been in 2021 but rather for Life in general and for the brief glimpses of hope and goodness we enjoy if we just keep open hearts and minds. Let’s cure Duchenne.  

Kindly yours,

Papa in Franklin

Thank You

Back to back days in November are important to me. November 10th is not only the birthday of the U.S. Marine Corps which I proudly served in the late 1970’s but also my first child’s birthday.

Thirty six years later, she gave birth to my amazing grandson Hayes. Thank you.

On November 11th, we observe Veterans Day along with Australia and Britain. My company does a wonderful job with recognizing the importance of veterans, whether they came from a battlefield or a support role for the warriors. Thank you.

Also, my beloved father-in-law passed on November 11th, nineteen years ago. His caring daughter has been my loving wife for 44 years. Thank you. 

For all of the November’s in my life, God has had faith in me and loved me and my family. Thank you.

We Duchenne families sometimes lose sight of our blessings because the dreadful, fatal disease is, well, a dream killer. But dreams can progress day to day, week to week, and month to month without our looking ahead to the end of a youngster’s shortened life.

Hayes, you are terrific. You have given, and continue to give, great joy and happiness to our family. And, wow, you are so smart. Our discussions about celestial bodies never cease to amaze me. Your spirit uplifts mine. Thank you.

Let’s all find reasons to give thanks during these times when gratitude may not be the first emotion we feel each day.  

Kindly yours,

Papa in Tennessee

Vegetable Oil

Last weekend, I had a spray paint can burst in my hand. Dark, oil based paint covered my face, arms and legs. I quickly took a long hot shower, heavily applying soap, and scrubbed mightedly. Then, I embedded my fingernails into the skin of my right arm and leg, trying to remove stubborn spots. Rubbed my self nearly raw.

Not satisfied, I quickly referred to internet articles for a better way of removing oil-based paint from my left side. An old time remedy of applying vegetable oil was mentioned in several articles. Immediately, I went to the kitchen, found a brand name vegetable oil, and started rubbing it on left side areas with a wash rag, much more softly than the right side application. Lo and behold, paint disappeared! And, I did not leave raw spots on the left side skin.

Duchenne researchers – let’s examine the relevance of this experience. I applied two methods to remove oil based paint from my skin. Each method worked, but one better than the other.

To begin, each application was used with as sense of urgency. One was instinctive while the other was counter-intuitive, namely, oil used to remove oil.

The method that employed elbow grease worked but not nearly as effectively as gently applying vegetable oil for a safe and efficacious chemical reaction. Smart.

The better approach was inexpensive and is available to anyone who has painted themselves. The initial application left rawness while the latter successful approach was soothing. 

Perhaps, research going forward intended to cure Duchenne, at least for ambulatory youngsters who have not yet succumbed to a wheelchair to live out their weakening and shortened lives, could revisit past research data and clinical trial results that may have been lost or forgotten in the shuffle of time. Maybe answers are readily available with a fresh look but simply have been overlooked.

During this scary period of a lethal germ pandemic, labs and research aiming to cure Duchenne may be short-handed. Funding may have shrunk. All the more reason to work smarter and not necessarily harder, although exhaustive work certainly is left to be done.

Duchenne researchers, please revisit all historic data (all the way back to the beginning of meaningful research) and trial results to see if finding a remedy or new steps towards finding a remedy to Duchenne are already before our eyes only to have been overlooked during the passage of time. Apply some vegetable oil before it is too late for so many.

Kindly yours,

Papa in Tennessee

Best of the Best

Yesterday, Saturday, I spent wonderful time with Hayes at his home. Mom went to get her hair done. Watched animated science shows. Learned more about the extinction of dinosaurs. Television viewing at its best.

Son Jonathan, aka Uncle Bubba to Hayes, joined us which made for even more carrying on. Such fun.

At the end of the day, daughter Ashlee wrote a message of gratitude to me and Uncle Bubba, thanking us for being there for them when they need us. Easy day.

She referred to us as the “best of the best” to count on. Sort of touched me.

In actuality, Hayes and his mom are the best of the best. Adorable 6 year old who is reading at 3rd grade level, doing math at easily a 5th grade level, and enthralled in science and astrophysics easily at an 8th-9th grade level.  Mom is successfully touching all of the bases with nutrition, school, friends, family, and a profound level of loving caregiving. Could not ask for more.

It is nice to be included on someone’s best of the best list, regardless of the honorable pursuit. Nonetheless, we are truly blessed with a best grandson and a best daughter who nurtures him, with a best support system with Uncle Bubba, Hayes’ hard working and loving father, and Hayes’ entire set of loving grandparents who are best at being totally supportive.

Best trumps being pretty good, but unconditional love trumps all.

 Kindly yours,

Papa in Tennessee

First Grade

Today, Hayes went to First Grade orientation. Had a blast. Teacher has 20 years of experience, and his best guy friend is in the class. Blessings, indeed.

The challenge for Hayes is that he is already performing at a better than 3rd grade level of reading, 5th grade level of math, and 8th grade level of science. We must keep him intellectually stimulated, even in the First Grade.

A good mind is truly a treasure that should not be wasted. Duchenne might take Hayes’ muscles, but his mind shall remain his to cultivate.

Our goal as family is to help Hayes experience Life at its best now so he may have warm, fun and well-rounded memories of a normal childhood to serve as an emotional anchor in later years when he may not be able to do normal activities.

This family is basically not much further than in the first grade of learning how best to cope with the dream killer. Hopefully, our mentors like Hayes’ teacher and our Duchenne family friends will provide us adults the same level of foundational joy to fuel good memories that will take us through darker days in the future.

Kindly yours,

Papa in Tennessee

Aim Higher

Have been watching the Olympics in Tokyo. U.S. athletes make us proud, again. Well done.

Back stories are almost as impactful as the athletic performances. Take April Ross. U.S. volleyball player. A few months before she arrived at Tokyo to compete, her mother and mentor died of metastastic breast cancer. Courageous is an understatement. April admirably competed and never invited a pity party.

However, breast cancer sponsors got their fifteen minutes of fame with commercials to support donations for breast cancer. Sounds OK, right. Timing is everything.

 But wait, I have listened carefully to their message. It is all about breast cancer research finding ways to prolong the lives of sufferers of breast cancer. Longer life -  strangely, no reference to a cure. That’s underachievement!

 We must shoot for the Black Hole in Space to reach planet Saturn. With Duchenne, we must stop fixating on making young boys more comfortable and, rather, truly seek a cure to the dream killer.

Olympians aspire and train and compete to reach seemingly unachievable performance heights. Why can’t researchers, medical providers, pharmaceutical companies, and donors for Duchenne mortal combat possess the same mind set? Answer – they can, perhaps different leadership is in order.

Come on, Duchenne community … let’s shoot for the gold!

 Kindly,

Papa in Tennessee

Cousins

Just returned from hot and humid but quaint and classy Fairhope, Alabama near Mobile Bay where we enjoyed the wedding of the beautiful older daughter of our best friends followed by a spontaneous reunion of family on the paternal side of my wife Mimi’s family.

Hayes and we visited the family where he met an adorable five year old son of a cousin twice removed from Mimi, making the boys cousins. They hit it off immediately as only adventuresome little boys are want to do.

After some play time, Hayes who loves numbers said to his newly acquainted relative, “I have five cousins and you are my sixth cousin.” Cousins in our family typically end up close friends for life.

Duchenne was privately discussed among us adults but never got in the way of those little boys’ playing and bonding. The dream killer had a bad day. No sadness or limitations that day.

Renewed goal: To support and encourage researchers, donors, and Duchenne families to do what they can to ensure that Duchenne has many more bad days, going forward.

Kindly yours,

Papa from Tennessee

All Star Game

Watching the MLB All-Star baseball game. Eight of the stars are under 24 years old Baseball is back. Youthful promise is good. 

Baseball recognized the 600,000 Americans who die from some form of Cancer each year. Kudos to MLB for keeping the nation’s attention on such a horrible killer.

 Duchenne is a dream killer. Most of the victims are youngsters. They will never play in a youth baseball game or any outdoors game, for that matter. Their muscle deterioration prevents them from being physically competitive.

Some, however, are quite bright. My grandson Hayes, for example, easily converses about electronic circuitry, astronomy, physics, and chemistry at six years of age as competently and interestingly as you would expect a high school prodigy to present He is intellectually amazing with an adorable personality.  

The point. No doubt, 600,000 cancer deaths per year is terrible. But, let’s not forget the dream killer in Duchenne Muscular Dystrophy. Promising kids’ lives are denied promise and America is denied the advances that would otherwise be realized if those talented kids lived a normal life.

There is only so much money available to promote mitigation and find cures to horrible diseases. All I ask is that rare diseases such as Duchenne that impacts kids not be overlooked.

Thank you, MLB, for keeping national attention on Cancer. However, we Americans and labs in foreign countries in general must keep attention on curing such a dream killer as Duchenne Muscular Dystrophy.

Kindly yours,

Papa in Tennessee

Escape

Finally, our family was able to take a vacation last week, to the beach and surf of Gulf Shores. Familiar playground from years past.

Newly constructed house, with lagoon, pool and dock on one side and a convenient path to the beach across the roadway. Weather was perfect, all week.

Hayes had a good time, despite DMD. Met another 6 year old at the walk-in pool who was fun. Spent quality time on the dock that extended into the bay. Discovered a small private beach where the sand turned green about 3 inches deep due to algae from local grasses. My son, Uncle Bubba, entertained Hayes essentially the entire time.

Took a pontoon ride into bay the last full day the family was together. Discovered what it is like to be involved in an actual rip tide … sort of scary.

These family trips with Hayes are priceless. It will not be long, perhaps another 2-3 years, before he will be unable to ambulate normally and enjoy normal activities, especially on a challenging surface such as sand and surf. We must make the most of each blessed outing.

Took over 11 hours to travel back home when the trip normally would take 7 hours. Vacationers from Destin and Gulf Shores converged on I-65 North which caused a rate of travel of 10-20 mph for significant distances. Miserable but for seeing so many license tags from so many different states all across America.

Odd. Most Americans are escaping back to a new normal while the new normal for Hayes and similarly situated DMD children further denies them an escape from the dream killer.

My hope is that ever improving medical science and significant funding that sustains the lab work and associated clinical trials will help us escape the tightening grip of Duchenne Muscular Dystrophy. May it become so.

Kindly yours,

Papa in Tennessee

Unmasked

After nearly 14 months of mandatory masking at various levels of daily living and working during the pandemic, most places in the U.S. and certainly locally have now removed the requirement for masks, generally.

Whatever side of science and good sense one may choose with respect to protecting themselves and their fellow man, unmasking has unmistakingly caused a nearly spontaneous rebirth of personal freedom and pursuit of happiness, albeit the terrible price in life, health, career and treasure paid due to the horrific pandemic.

Now, we can breathe. To the research scientists, clinicians, and medical providers working towards a cure for Duchenne, let’s unmask the perceived limitations of the past and energetically charge towards new thinking.  Let’s push forward with new technologies such as CRISPR genetic repair and other promising approaches and forge a new future for the living young and lives yet to be born to be free of the DMD dream killer and enter a long overdue period when Duchenne is unmasked.

Kindly yours,

Papa in Tennessee

Stormy Spring

Spring 2021 sure has experienced strong storms, including foreseeable tornadic activity, the unforeseeable frequency of hail storms, a lot of rain, and particularly strong winds. Cause(s) aside, severe weather is just another weird chapter in the ongoing pandemic saga. The pandemic will end. What about such bad weather, during Springtime when spirits and flowers are suppose to blossom?

The point? Normalcy or a return to normalcy may be becoming a myth for our American culture. Is that all bad? Perhaps, not.  

For a horrible price paid, in lives and treasure, Americans have an opportunity to reset. Pick personal and career priorities that exceed prior expectations. Get better, smarter, and more willing to dare new paths in Life. Whatever great things we were doing two years ago, let’s do even better going forward.

 For me, personally, I am reading more Scripture. Regardless of belief system, the common man wisdom exemplified in the Scriptures is truly quality of Life changing.

As for Duchenne, one could argue that the search for a cure has been exceedingly disappointing for most of the last 25 years. There have been brief moments of hope from early stages of clinical trials only to disappoint. It’s a nasty twist of genetics gone awry.

Idea: To the researchers, labs and clinicians looking at DMD … RESET. Let’s get better, smarter, and more daring with fresh ideas and methods.

Post-pandemic, my hope is that Duchenne warriors will refuse to be satisfied with a return to normalcy and, rather, will carve out new and inventive paths to a cure, sooner rather than later, please.  

Kindly yours,

Papa in Tennessee

Late Can Be Good

Food insecurity, even in a wealthy county or on good college campuses, is a dirty little secret prevalent in our communities. Look up food pantries and you will see the effort that is being made to help adults, children, and students not go to bed hungry.

 Recently, I took part of a bonus given by my generous employer and bought groceries at a local store. Mostly canned goods and fruits, cereals, water and personal hygiene items. I broke the items into a number of cardboard boxes, and put the boxes in the back of my SUV with the plan that, whenever I saw a need, I would gift a box of food.

This weekend, I was down to four boxes. On the internet, I learned about the wonderful mission of One Generation Away that has been distributing food, questions unasked, for years. This Saturday morning, they were scheduled to have a busload of food distributed at Grace Chapel in Leiper’s Fork. 

Unfortunately, I slept in due to a tough week. After morning basics, and a couple of runs to town, I headed out to Leiper’s Fork to donate my remaining boxes of food. Dang, in the rain, I arrived a bit late and the truck was already gone. There was a wedding about to start, however, at the Chapel. Looked like fun.

My fall-back plan was to take the boxes of food to GraceWorks in Franklin near Tractor Supply. Thankfully, there were a number of teenagers working in the back of the building who gladly accepted my food donation. I am certain those items will end up helping others. 

On my way out, I could not help but notice the flowers placed at each gravesite of Williamson Memorial  Gardens cemetery. I drove through the hallowed grounds and read some of the markers. It is amazing to me how many folks live well into their nineties!

 I thought of the lovely poem written by Linda Ellis, The Dash. The message is that our birthdate and our death date are not as important as the time between the two … the dash between those dates … what have we done with our lives. Worth pondering, indeed.

How does this tie me back to Duchenne and my very smart grandson Hayes? I reflect on the progression above: identify a good cause; take affirmative steps to help the cause; give more than enough; do not let any good go to waste; community will help; remembering and revering good souls gone past preserves the authenticity of the moment; do not take anything for granted; and, persist in getting good results. Oh, and did I include – pray, read scripture, and pray some more.  

My food donation did nothing to help cure Duchenne. It had no effect on my grandson or his deadly condition. Nonetheless, the effort reminds me that there are lab clinicians, medical providers, non-profits, financial sponsors, parents, and young people whose lives are driven by the hope that Duchenne Muscular Dystrophy will have its own gravesite one day. My prayer is that the dash left behind by the dream killer does not include too many more souls hungry for a more normal future.

Kindly,

Papa in Tennessee