KCNQ2’s Global Connections

KCNQ2’s Global Connections

We are excited to see KCNQ2 on the international stage with this fabulous news coverage. More than once we have been told by researchers and seasoned epilepsy advocates that the KCNQ2 community is viewed as a model of motivated families joining forces to drive medicine forward. It’s a big honor, and a bigger responsibility, to be thought of as an example of how to do things right. Because as Whole Exome Sequencing and other genetic testing becomes readily available, more and more families will arrive where we all were just a few short years ago, stuck with a strange alphanumeric diagnosis that offers precious little information, wondering where in the world to turn.

 

The power of parents connecting.

It is essential for the KCNQ2 kids that parents find the support they need. It’s like the old drill about the oxygen mask that falls in case of an in-flight emergency. The parents need to breathe before they can help their children. For parents who live in the rarefied atmosphere of raising a KCNQ2 kid, lifting one another up by sharing ideas, questions, frustrations, fears and joys is that oxygen.

Connecting for the Kids @AES 2015

The latest news piece speaks volumes about parents connecting, but behind the scenes there is another important story to tell. Simply put, these rare KCNQ2 kids have inspired the researchers themselves. Just a few years ago it was almost impossible to find anyone researching KCNQ2, and those who did were focused on theory and molecules. Now many of them have encountered real children who bear the gene. The scientists have someone, and not just something, to study. And they have looked into the eyes of the parents and seen their life’s work reflected there in new, urgent ways.

This human connection has compelled the experts to greater levels of professional collaboration. Breaking out of their individual “silos,” they too are redefining new cooperative models for advancing the science: They are sharing data, coauthoring papers, and writing grants together across the ocean. At the AES meeting in Philadelphia in a few weeks, thousands of doctors will hear more than ever before about KCNQ2 in the open sessions.

This year at AES a multinational team of KCNQ2 experts will meet in a daylong special session sponsored by grants from the National Institute for Neurological Disorders and Stroke (NINDS), Citizens United for Research in Epilepsy (CURE Epilepsy), and The Jack Pribaz Foundation. We are excited to learn what will emerge from this new worldwide collaboration. When you can bring motivated people together, good things are bound to happen for the KCNQ2 kids.

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On a Mission: AES Seattle

On a Mission: AES Seattle

If you were a doctor or researcher working your way through the exhibition hall of the American Epilepsy Society’s Annual Meeting in Seattle last week, you would have noticed something new this year. For the first time, KCNQ2-related epilepsy was represented.

AES booth all set

AES booth all set.

The Jack Pribaz Foundation (JPF) sponsored a big corner booth and a banner that splashed our message overhead on a 20-ft. LED display.

LED media wall, with Angela Cherry for scale.

LED media wall, with Angela Cherry for scale.

With our purchase of the LED spot, we had exactly 15 seconds (looped repeatedly over three days) to catch the attention of the more than 4300 doctors and researchers, plus potential advocacy and industry partners, who wandered the exhibition hall. “KCNQ2” was on the screen for the entire spot, to help people get used to seeing it among the alphabet soup of rare genetic epilepsies: PCDH19 and CDKL15, for example, plus the better-named disorders and their interest groups that have been around longer, like Lennox Gastaut Syndrome, and Dravet Syndrome.

mike splaining at booth

Dads Mike Pribaz and Jim Thompson engaging docs.

In the LED banner ad we also animated the four-armed logo to reinforce our four strategic aims, which we came to Seattle to advance. So did we accomplish our mission?

1. Fund research.

In Seattle the JPF announced our new research grant application process. In the booth and online, instructions are now available for researchers who wish to write a letter of inquiry to initiate the process of applying for financial support. Our scientific advisory panel will help determine which proposals will merit funding.

2. Raise awareness.

Have you heard of KCNQ2?

busy booth AES

Busy booth!

Even though most of the doctors attending the AES meeting treat people with epilepsy, a fair number of them answered no to this question. We talked to hundreds of people, passed out pamphlets, pens, notebooks, and handshakes. Dozens of folks signed up to receive our free Q2 newsletter. And the reviewers who will be scoring Dr. Cooper’s Center Without Walls grant proposal are likely to have been there and will have noticed the flurry of interest that KCNQ2 was generating in the exhibit hall and in the research presented in the scientific sessions.

3. Empower Parents.

We want to thank Jim Thompson, Annika’s dad, who volunteered to travel from Iowa to help us man the booth and work the crowd, which he did brilliantly. It was wonderful to get to spend time with him. Thanks, Jim!

In a way, Jim wasn’t the only parent representing the KCNQ2 community with us. On the table in the booth we set up a monitor that looped the banner ad with the video Lisa Miller made this summer (see link) featuring the faces of so many of the KCNQ2 kids whose families have joined together in this cause. Many stopped by to watch it, to put sweet faces with the KCNQ2 name. The children have an important story to tell, and the medical community is starting to listen.

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Jim Thompson, Dr. Ed Cooper, Mike Pribaz

There’s so much more work we can do together. Numerous visitors made it a point to tell us that this foundation work is important, that it truly helps move the ball forward. That was nice to hear, and we are proud to pass that praise right along to you, our partners who support us in big ways and small. #togetherinsearchforacure!

4. Create Collaboration.

In Seattle we networked with clinicians and researchers from across the nation and world. We met with our scientific advisers and some of their colleagues,and heard more about their work. We made some friends among the pharmaceutical set, too, and are following up with them about some exciting educational partnership ideas. Stay tuned.

But perhaps the most promising development at AES was being invited to attend a pre-conference meeting run by Professor Anne Berg of Lurie Children’s in Chicago. Together with several clinical, research, industry, and parent advocacy leaders in early life epilepsy, we talked about concrete ways we can collaborate.

Drs. Peter De Jonghe, Sarah Weckhuysen, and Ed Cooper.

Drs. Peter De Jonghe, Sarah Weckhuysen, and Ed Cooper.

While our different genetic conditions alone may be rare, the argument is starting to be made that, considered together, the kids who have early life epilepsies account for an important clinical population that needs more attention. How can our different groups find ways to work together toward common goals? In Seattle that conversation expanded to include new voices, and we are thrilled to have represented KCNQ2 among them.

 

After the Summit: Back Down to Earth

WEckhuysen w Fitz'sOne dad said it almost like a kid who’s been told the play date is over: “I’m not ready to go home.” Before the Denver Summit was half finished, he was already dreading the inevitable return to normal life. It was understandable.

There was something so empowering about being surrounded by a KCNQ2 crowd–a dozen or so children and families, plus siblings, grandparents, friends, doctors, and researchers.

Maybe it was the novelty of meeting other people who really know what life is like on Planet KCNQ2. They understand each others’ superpowers and kryptonites. Or maybe it was the feeling of family reunion that permeated the Summit as parents posed for group shots and held each others’ babies. Of course there was definitely something reassuring about seeing and hearing firsthand that brilliant, compassionate experts are hard at work on behalf of these children.

But perhaps most powerfully we sensed a brimming energy. We could feel a convergence of individual enthusiasm, like so many mirrored panels all focused on one bright tower. We were a KCNQ2 solar collector, each reflecting and concentrating light to convert it into usable energy.

 

NOW WHAT? KCNQ2 tote

Coming down from altitude is never easy. The question now, on a Monday morning, is how can we use that energy going forward? How do we channel the spirit of the Summit?

First of all, TALK IT UP! Together we need to spread the word. Share your pictures from Denver. Slap that bumper sticker on your car (and take a photo of it, next to your license plate. I’m starting a collection for a fun photo gallery!).

Check out the new KCNQ2.org website, which is updated and ready for action. Dr. John Millichap did a phenomenal job of contributing to the medical portal for all those doctors and other medical professionals who want an overview of the science of KCNQ2. We will also be building up the virtual library with videos and adding resource content as we get it. Let your doctors know that they can direct their colleagues there.

Whenever a friend or relative asks how they can help, please let them know about our new portal designed with them in mind. It explains there how the Jack Pribaz Foundation is a public charity and that gifts are tax exempt. Find ways to help support the cause. And if you have other suggestions, let us know!

INSPIRING IDEAS

One family in Denver told me that for their daughter’s birthday they asked for friends and families to make a donation to the Foundation instead of bringing a birthday gift. What a great idea!

Perhaps you heard this very touching story: We received a check in the mail in memory of a name we didn’t recognize. That name turned out to belong to the great-grandmother of one of our KCNQ2 kids. The two had shared a special bond, and when the great-grandmother passed away the family asked for donations to the Foundation in lieu of flowers. We were so moved.

And then there’s the amazing example of Gwen’s mom Gretchen, who held a fundraiser in her hometown of Youngstown, Ohio, at a local martini bar. She put together an outstanding event that raised more than $3000!!! Her good friend Melinda held a second fundraiser by baking cookies. $800 worth of sweetness!! Way to go, Ohio! You are an inspiration!

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THANKFUL

We have always believed that the way forward is together. We have to thank the people in Wheaton, Illinois, who have supported this Foundation from the very beginning, and the many folks who have joined us along the way–now from all over the world! A special thanks to the Lazaridis family from Toronto, the Fitzpatricks who crossed the sea from Dublin, Vivi Lopez de Rodriguez who came from Guatemala, and all who came from far and near. Our love to those who could not make the journey but were with us in spirit. And of course a very special thanks to Jim Johnson and Scotty Sims for all their successful hard work. It was a few days we will never forget!

Are you inspired by what happened in Denver? Let’s keep moving forward Together in Search for a Cure!

  sadie and abigail millichap lecturing Nancy and GG -9gretchen gwen and sara annikameeting mark hugs

Meet the Experts: Dr. Ingrid Scheffer

 

Dr. Ingrid Scheffer

Dr. Ingrid Scheffer

When I got in touch with Dr. Ingrid Scheffer she was away at an epilepsy conference in Bologna, Italy, after having just hosted a major Dravet Syndrome conference in Melbourne. We are very grateful that the globe-trotting epilepsy expert has agreed to participate in the Denver KCNQ2 Summit. As she catches her breath back home in Australia, we will “beam” her in (if she can sit still long enough!).

Professor Scheffer is Chair of Pediatric Neurology Research at The University of Melbourne and Senior Principal Research Fellow at the Florey Institute of Neuroscience and Mental Health. She is a founding fellow of the Australian Academy of Health and Medical Sciences and is currently its Vice-President. She has served the International League Against Epilepsy in many capacities and held the Chair of the ILAE Commission for Classification and Terminology from 2009 until 2013. Read more about her background here.

Dr. Scheffer has received numerous awards for her groundbreaking work. One of her recent accolades is the prestigious 2012 L’Oréal-UNESCO Laureate for Women in Science for the Asia-Pacific Region. These annual awards are given to five women scientists, one from each of five global regions, whose exceptional careers blaze trails for the next generation of women scientists. Dr. Scheffer was the first to win for epilepsy research, and it is rare for this prize to be awarded to a physician-scientist.

 

Dr. Scheffer’s work is praised on the UNESCO website:

Ingrid Scheffer is helping to transform the diagnosis and treatment of epilepsy, a brain disorder characterized by seizures and other symptoms that can be extremely disruptive to the lives of the 50 million people affected by it. She has described several new forms of epilepsy and her research group was the first to uncover a gene for epilepsy and subsequently, many of the genes now known to be implicated. These revolutionary findings, which have already improved diagnosis and treatments for many patients and may lead to the development of new therapies, can also be used for genetic counselling. Professor Scheffer’s goal is to ‘make a major difference to patients and families through science’.

Professor Scheffer collaborated with the Belgian group of Dr. Sarah Weckhuysen and Professor Peter de Jonghe to delineate KCNQ2 encephalopathy. There had been a few previous reports of single patients with severe disorders and mutations (abnormalities) of the KCNQ2 gene but the disorder had not been well recognized.  Their team identified a group of children and delineated this severe disorder, now recognized worldwide.

Professor Scheffer has worked with the Belgian group to report a second group of patients including a more mildly affected child that she looks after, expanding our understanding of the presentations of this disease. Get a glimpse of Dr. Scheffer’s work with the daughter of our good friend Sara James Butcher, in a 30-minute documentary for the “Australian Story” series.

KCNQ2 encephalopathy is one of the severe epilepsies of infancy and childhood known as developmental epileptic encephalopathies which are now recognized to occur due to mutations in a large number of genes. Typically a child has a mutation in one gene that arises newly in the child and is not inherited from their parents. By recognizing a specific disease such as KCNQ2 encephalopathy, Dr. Scheffer explains, we can learn which medications control seizures and which medications make seizures worse. We can learn about the outcome of this disease and the various medical problems (co-morbidities) that may occur such as autism spectrum disorders, cerebral palsy, sleep and feeding disorders.

Dr. Scheffer says the biggest challenge she faces in her work is finding enough hours in the day to care for her patients and families and to fulfill her other roles of teaching and mentoring young clinicians and researchers and working on her research, let alone her administrative responsibilities in the hospital and university – and finding time to see her own wonderful family and friends. She is passionate about her patients and her research and her dream is to find a cure to these devastating disorders.

 

 

 

Meet the Experts: Dr. Edward Cooper

Edward Cooper

Dr. Edward Cooper

It was the first week of January, 2012. My nephew had received his KCNQ2 diagnosis in November, but so far we had found no particularly useful information, no foothold in the mountain we knew we would have to start climbing. All we had were 4 letters and a number.

Maybe it was pure New Year’s optimism that made me try Googling K-C-N-Q-2 all over again. It’s a time of year we believe more than ever in the power to make positive change. So it was in that spirit I found someone named Dr. Ed Cooper down in Texas. There was an email address. I sent it to my brother Mike and asked, “Why not give it a shot?”

Mike composed a note to Dr. Cooper, hit send, and prepared for a long wait for a response. But the reply came the very next day, and so began an amazing journey of collaboration, discovery, and connection. We are so grateful for Dr. Cooper and his tremendous support. And we encourage you to get to know him too! Register your child in his RIKEE project to help make positive change in the understanding of KCNQ2-realed epilepsy.

Q.Can you briefly describe your background?

A.I grew up in the northeastern US, attended Yale, studying history and pre-med, and worked as a lab tech at UC San Francisco for a couple years before returning to Yale as an MD PhD candidate.  I returned to UCSF for my neurology residency training, and stayed on as a post-doc before establishing my own lab.

Q.How did you first get interested in studying epilepsy and the KCNQ2 mutation?

A.Before KCNQ2 was discovered, I had already worked on related voltage-gated channels for about 10 years during my PhD and post-doc.  As a neurologist in training, I anticipated epilepsy would be related to channels more clearly than was then known—in fact, others had begun to uncover how mutations in channels could result in diseases, both in experimental animals and man.  My mentors at UCSF, Lily and Yuh Nung Jan, had cloned the very first potassium channel gene, showing that its mutations caused attacks of uncontrollable shaking in a widely used genetic model.  Lily was asked to peer review the first papers describing the link between KCNQ2 and KCNQ3 and human epilepsy in 1998. When the papers were accepted, Lily asked me, as the only neurologist in her research group, to help in preparation of an accompanying editorial. I was fascinated by the new work, switched my postdoctoral project to KCNQ channels, and published my first papers in collaboration with Lily in 1999-2001. That work allowed me to begin my independent lab.

Q(2).What are the biggest challenges you face in your work? What inspires or drives you as a researcher of genetic epilepsies?

A.Interestingly, I think of your two questions as inextricably linked—the challenges are inspiring.  First, I am in this to help the patient–that’s the fundamental goal. Second, I am inspired by the beauty and surprises of the brain’s mechanisms, appreciation for that is something that deepens with training. Third, the collaborative team spirit in research, learning from great teachers and working with able students, makes it fun even when it is difficult—with KCNQ2 this has now been broadened to include the collaboration with parents and families that has become so important for our work.

Meet the Experts: Dr. John Millichap

Dr. John Millichap

Dr. John Millichap

Dr. John Millichap is next up in our Meet the Experts series.

He is a Pediatric Epileptologist in the Comprehensive Epilepsy Center, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Assistant Professor of Pediatrics and Neurology at Northwestern University Feinberg School of Medicine. He completed residency in pediatrics at the Brody School of Medicine at East Carolina University, residency in Child Neurology, and fellowship in Clinical Neurophysiology / Pediatric Epilepsy at Children’s Memorial Hospital (now known as Lurie Children’s) and Northwestern University Feinberg School of Medicine.

Jack is very fortunate to have Dr. Millichap caring for him as a patient, and we are privileged to have his tireless help as the medical adviser to the Jack Pribaz Foundation.

 

Q.How did you first get interested in studying epilepsy and the KCNQ2 mutation?
A. I developed my subspecialty interest in the evaluation and treatment of epilepsy during my Child Neurology training in Chicago under the mentorship of Douglas Nordli, MD, the head of the Epilepsy Center at Lurie Children’s.  After the first patient with KCNQ2 encephalopathy was diagnosed at Lurie Children’s, his parents contacted Dr Ed Cooper at Baylor School of Medicine, who has provided support and mentorship for my research in this field.

Q. What are the biggest challenges you face in your work?

A.One of the main goals of epilepsy treatment is to achieve no seizures, without side effects.  Knowing the cause of the seizures is not only important for choosing the right treatments, but also for parents’ peace of mind and to end the need for continued testing.

Q. What inspires or drives you as a researcher of genetic epilepsies?

A.Caring for treatment-resistant epilepsy is a challenge.  I am hopeful that improvements in genetic testing methods and the increase in knowledge about the causes of epilepsy will improve the lives of children with epilepsy.

 

Meet the Experts: Dr. Sarah Weckhuysen

For those who will be traveling to the Denver Summit in September, and also (or maybe especially) for those who will be with us in spirit, we wanted to introduce you to some of the experts who will be sharing their insights on KCNQ2-related epilepsy.

Dr. Sarah WEckhuysen

Dr. Sarah Weckhuysen

We begin this series with Dr. Sarah Weckhuysen, who was the first author on the first paper to describe KCNQ2 encephalopathy and who will be traveling the farthest to be with us!

Q:

Can you describe your background for us?

 

A:

I am a neurologist/epileptologist, born and raised in little Belgium in Europe. After obtaining my Neurology degree, I worked for some years as an epileptologist in the tertiary epilepsy center Kempenhaeghe in the Netherlands. This work with often treatment resistant epilepsy patients fuelled my fascination for the underlying causes of (severe) epilepsies. In the last few years I therefore intensified my research activities at the Neurogenetics group of the University of Antwerp in Belgium, and obtained a PhD on the topic of genetics of epileptic encephalopathies. My research interests are focused on the delineation of epileptic syndromes, and the genetics of (early onset) epilepsies and febrile seizures. I’m also an active member and coordinator for the European consortium EuroEPINOMICS-RES, which focuses on the genetics of rare epilepsy syndromes.

Q:

How did you first get interested in studying epilepsy and the KCNQ2 mutation?

 

A:In the Neurogenetics group we have been screening the gene KCNQ2 for several years in patients with the mild familial epilepsy syndrome “Benign Familial Neonatal Seizures.” In 2004 we discovered that de novo mutations in this gene (mutations only present in the patient, not in the parents) could also be found in patients with benign neonatal seizures without a family history of epilepsy. Since then we offered this genetic test to patients with neonatal seizures coming from around Europe. One of these patients in which we confirmed a de novo KCNQ2 mutation, subsequently appeared to have a more severe disease course than expected, and her development clearly appeared to be slower than normal. We wondered whether this was related to the KCNQ2 mutation or a pure coincidence, and we decided to further investigate this question. In collaboration with Ingrid Scheffer’s group from Australia, we collected a large group of children with neonatal seizures and subsequent developmental delay, and searched for KCNQ2 mutations in this group. We indeed found a de novo KCNQ2 mutation in 10% of these children. That’s how the disease entity KCNQ2 encephalopathy was first described.

Q: What are the biggest challenges you face in your work?

 

A: One of the biggest challenges for me, and I believe for all people working in epilepsy genetics now, is how to take our research one step further: During recent years our possibilities to identify new genetic causes for epilepsy have increased tremendously due to technological advances. More and more children with childhood epilepsy are offered a genetic diagnosis. We now have to think how we can translate this genetic knowledge into better patient treatment. Because at the end as a clinician, I not only want to provide a diagnosis to a patient, but also a cure.

Q:What inspires or drives you as a researcher of genetic epilepsies?

 

A:This strongly relates to the previous question. For me studying the genetic causes of epilepsy is a way towards a better understanding of the underlying causes and mechanisms in epilepsy. This is an important issue, as one third of the patients with epilepsy have treatment-resistant seizures, and thus do not respond well to currently available anti-epileptic drugs. Understanding what causes seizures in specific groups of patients is a starting point for the development of new and more specific treatment options for these patients. Although at this moment a genetic diagnosis rarely influences treatment choices in epilepsy, I do believe this is something we should aim for in the future.

On Helicopters

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We could hear it approaching before we could actually see it.

On July 14 at Klein Creek Golf Club in Winfield, Illinois, a crowd gathered on the ninth green. We were golfers and caddies and volunteers who had been together since breakfast. We were folks just free from a long day at the office, ready to have some fun. Some of us fought traffic, like Dr. John Millichap, who hurried to join us after work at Lurie Children’s Hospital downtown, still in his suit and tie. We were some 225 friends new and old, some all the way from Denver and California and Florida and Las Vegas. And we were all focused on something together, expectantly, looking up.

If you think I’m going to say that that something was a helicopter, you are half right. Against a blue sky no one would have believed possible hours earlier, a red helicopter emerged. It hovered for dramatic effect over the tenth hole and then dropped its payload. The lucky golf ball closest to the hole won $5000; the sale of chances brought in thousands more. And when the evening was over, the Third Annual Jack’s Army Golf Outing had raised an astounding $80,000 to research KCNQ2-related epilepsy and raise awareness. This crazy success proved what we already knew: The devotion of this Foundation’s supporters runs deep.

Jack’s parents felt that support, and so did Harper’s and James’ parents, our very special guests that night, and the families of all the children far and wide who seek a cure. I know I speak for all of them when I say thank you to all who share so generously of their time, talent, and treasure. When people come together to work for a common goal, amazing things can happen.

Reflecting on the golf outing, I see the helicopter as something more.  It’s a metaphor for the hope for a cure that will come. We just know it. We can hear it in the distance, coming closer, and feel it reverberate in the air around us. That’s why we stand together and look up.

 carts lined up foursome 1 old friends foursome IMG_9194  IMG_9210 IMG_9209IMG_9211

 

 

 

 

All together now!

A huge hip hip hooray for the Jack’s Army faithful who came out despite the stormy skies to golf yesterday. The clouds parted (literally) and we enjoyed another wonderful day together, with friends old and new, from near and far. Special heartfelt thanks to our guests of honor, Harper from Colorado, with her parents Jim and Scotty, and James from California, with his mother Caroline.

At the evening event we watched a beautiful video (thank you Lisa Miller!) that gave us a look back at how Jack’s Army started, and how it has grown. In fact, it has grown so big and far-reaching that we at The Jack Pribaz Foundation have launched a new website to provide a home for all the many groups that have sprung up to support kids like Jack and Harper and James all over the world. Come check it out at www.kcnq2.org.

Meanwhile, we’re still hard at work back home here at Jack’s Army. Stay tuned for deluxe coverage of the Third Annual Golf Outing. Photographers are in their digital darkrooms and bean counters are tallying up the wild auction action. Thank heavens for crazy golf addicts, Blackhawk fanatics, and people whose appetites are as big as their generous hearts.

 

 

A $500 Jake Shimabukuro-signed ukulele, and other stories

ukulele

Guest Blogger Jason Lent writes about why Jack’s Army matters to him and about how he made it matter last night with his ukulele at the Hard Rock Café in Las Vegas …

I met Jack’s father Mike in high school one miserable, humid day in Boca Raton, FL. We were young guns trying to make our way on the Pope John Paul II high school basketball team. It was fairly evident early on that neither of us would be pursuing a career in the NBA, but “Salt of the Earth, Won’t Play A Second” and “No Talent, Has To Play” (as our coach dubbed Mike and me, respectively) stuck with it for all four years. College sent us in different directions but the friendship endured.

I was in Hawaii when Jack was born and I remember Mike’s message that “there was a problem” in the hours after the delivery. It was a heart wrenching experience watching my best friend and his beautiful new wife grapple with the unknown. The year that unfolded was full of ups and downs and it took its toll on the family. When the opportunity arose in 2010, I ditched my job in Hawaii to follow my muse as a music writer on tour with Cowboy Junkies. My home base for the journey became Mike and Liz’s basement where two TV’s and an infamous purple blanket were all I needed to stay warm and content. It was a wonderful experience living with them and learning more about Jack’s condition. The annual Jack’s Army golf tournament inspired me to become a more serious golfer, and winning it someday will be my Masters.

Growing up in Florida, one of the first concerts Mike and I ever attended together was Jimmy Buffett at the Sunrise Musical Theater. We were instantly transformed into Parrot Heads. The mix of rum, beach bum laziness, and general disregard for taking life too seriously fit us perfectly. When I took a job working for Jimmy Buffett in Hawaii, Mike was probably even more excited than I was. Hawaii is full of talented musicians and ukulele master Jake Shimabukuro was one of my favorites. We became friends during my time working with Jimmy Buffett as Jake began touring with Jimmy and playing in his band.

Last night in Las Vegas, I had the privilege of watching Jake play the venue I now manage. As soon as Jake recognized me last night, I was greeted with a warm hug and we caught up on the missing years. I mentioned my time in Wheaton, IL, with Mike and the family. I talked about the amazing work of Jack’s Army and asked Jake if he could sign my old ukulele for a charity auction. He was eager to participate, and I put together an auction just before we opened doors for the concert. Two fans began to bid aggressively as the ukulele became a two-horse race.

After the show, I was pleased to see the winning bid was $500 from a huge Jake fan. As Jake came out after the show, he gave the winner a hug and thanked him for supporting Jack’s Army. It was the kind of night where everyone went home happy and Jack’s Army took another small step forward on the road to a cure.

Jake S and Jason

The incomparable ukulele maestro Jake Shimabukuro and the amazing Jason Lent.

Jack’s Army would like to thank Jake for his support. And to his fan who won the auction: Thanks, man! And of course, hats off to the talented Jason Lent for his creative fundraising and for this dispatch from the road.