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

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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.

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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.

Thank you to the Lowell Eagles!

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The 5th graders at Lowell Elementary School in Wheaton, Illinois, hosted Jack’s Army on Friday, April 11, 2014. They greeted Jack Pribaz, his kid brother Matt, and parents Mike and Liz with big smiles.

The visit gave students a chance to learn a little bit about KCNQ2-related epilepsy and how, even though it is a very uncommon disorder, lessons learned from studying this condition can help researchers understand the bigger picture about epilepsy and its causes.

The kids asked many good questions, most of them on much simpler topics: “What does he eat?” “Can he talk or play?”  “What is his day like?” Their curiosity about Jack as a boy shows that at the heart of any support for a cause like Jack’s Army lies compassion.

The students received magnets and t-shirts, and also learned about how through the foundation, the website, and social media, Jack’s Army has been able to help find and assist other kids around the world. They were amazed at the impact one little boy can have.

And they took that lesson to heart! The Lowell school community raised $700 for Jack’s Army!

Mike and Liz were blown away. Liz thanks Mrs. Denise Uthe for inviting them to Lowell. She says, “The 5th grade class and teachers really welcomed us with open arms and they were very determined to raise money for the foundation.  They are an unbelievable group of kids and we are so happy that they picked the Jack Pribaz Foundation.”

After the visit, their teacher had the students write about their experience of meeting Jack and his family. Some of their responses are posted at their school blog. We are touched and grateful for their support.

Mike Pribaz sends out his personal thanks: “This is another wonderful example of this community stepping up to help a family in need. It is so encouraging to see such energetic and caring kids taking part in such an important cause. We could never thank the Lowell family enough for all they have done for Jack and those who share his condition around the world.”

Mike and Liz and the boys look forward to revisiting Lowell on June 10 for a school assembly. They are eager to meet all the amazing students and staff who helped make the fundraiser such a success. See you again soon, Lowell!

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Walking the Walk, Talking the Talk

 

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photo courtesy Epilepsy Foundation of Greater Chicago @EpilepsyChicago.

Jack’s Army marched on Wheaton, Illinois, on Saturday, April 26. The Epilepsy Foundation of Greater Chicago’s annual 5K walk/run was held in our own backyard at beautiful Cantigny Park. The weather cooperated, the sun smiled on all the walkers, and it was a great day.

For the first time Jack’s Army had a tent, which gave us the opportunity to pass out t-shirts, car magnets, and informational brochures. And, of course, it was great to get a chance to talk with people and tell them about KCNQ2-related epilepsy.

Many who stopped by were amazed at how quickly our organization has grown and how much impact we have made already. One family was eager to learn about KCNQ2 because their child had no diagnosis and had not been tested. It was great to be able to tell that family that there is now a rapid test available. Even just last year we would not have been able to offer that idea. Thanks, Dr. Cooper!

There is still much work to do to get the word out. Even within the epilepsy community in our own neighborhood, many people had not heard of Jack’s Army or KCNQ2-related epilepsy. Having a booth at this big event was a great asset to our cause.

We value the partnership between Jack’s Army and The Epilepsy Foundation of Greater Chicago. which hosted the annual fun-filled 5K run/walk. With 1200 people walking, they broke attendance records–up 25% from 2013.

Two more Chicagoland Epilepsy walks are yet to come: May 3 in Libertyville and May 10, the largest of the three, downtown at Montrose Harbor. Need more reasons or locations to participate? Click here.

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Why Walk? Top 5 Reasons to Do Your Local Epilepsy Foundation Walk

Why Walk?

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Jack’s Army at our first Epilepsy Walk in Wheaton, IL, May, 2009.

Nearly 5000 people gathered on the National Mall in Washington on Saturday, March 22, for the 8th National Walk for Epilepsy. According to their website, the event raised more than $900 K for research.

The money is important of course. Very important. The fact that one in 26 Americans will develop epilepsy at some point in their lives should mean that epilepsy research receives tons of grant money, but it doesn’t. Cure Epilepsy reports that “epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these.” Epilepsy research is woefully underfunded.

But why walk? The first time I registered to participate in my local Epilepsy Foundation chapter’s Wheaton, Illinois, event, I did it for my new nephew Jack. But I’ll be honest: I wondered what the heck I was doing it for. Besides the money, I mean, which was obviously a good thing.

It was 2009, and Jack was a little more than 2 months old. We had no diagnosis beyond “some kind of epilepsy” yet—KCNQ2 was nowhere on our horizon—and I remember Mike and Liz had to scramble to get a group together and have some t-shirts printed. The registration forms wanted a name for our group, and that’s when Mike and Liz first wrote in “Jack’s Army.”

These were still our weepy days, when the overwhelming weight of Jack’s poorly understood but clearly serious condition was just beginning to settle heavily on our shoulders, and we were all learning how to bear up under it. The pain of his lengthy hospitalizations and batteries of tests was still raw and frightening. A walk in the park seemed more than a little ironic to me.

But the day for the walk arrived and we all donned our camouflage t-shirts and assembled around Jack’s stroller. Between family and friends, there were quite a few of us, dozens and dozens. Suddenly we were a physical army of friends and family, and I understood then why we were doing it.

Here are 5 reasons why you should walk, too:

1. Moving is better than standing still. Especially in the early days of a diagnosis, getting out of your routine and walking converts nervous or sad energy into positive energy. It is an easy way to take a step forward, literally.

2. Epilepsy can feel isolating.  But participating in a Walk is bright proof that your child is not alone. You will be surrounded by a rainbow of t-shirts— inspired groups of people rallying around each other and making connections.

3.  Epilepsy is a family affair. The people who love you and your child with epilepsy are affected by it too, and they want to do something. This is a great opportunity for all generations to get involved. It’s a fun way to help siblings take an active role, too. My kids were so proud to take turns pushing their cousin Jack in his stroller.

4. Represent! Besides the goal of raising money, the walk raises awareness of the different faces of epilepsy. If your child has an uncommon one like KCNQ2 epilepsy, this s great opportunity to educate others. Join your child’s story to the many others that are out there.

5. Grow the numbers. The number of dollars to support research, the number of people who turn out to show their support. Epilepsy Foundation walks all over the country are building a proactive community working together to find a cure, and we need you!

Wednesday, March 26 is Purple Day to raise awareness of epilepsy. It’s a perfect  time to register for your local epilepsy walk. You can find yours on the Epilepsy Foundation website. A special shout to our friends in Chicago, Houston, and Denver.   Take a walk!

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The Power of Parents Connecting

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The Jack Pribaz Foundation Board and guests. Front row, L-R: Eric Pierce, Mike Pribaz, Ed Cooper, Brian Baird; women in the middle, L-R: Liz Pribaz, Laura Javech, Gina Pribaz Vozenilek, Sara James Butcher, Scotty Sims; Last row, L-R, John Vozenilek, Jim Johnson

You’ve probably heard stories of the crazy feats of strength that a panicked parent can perform when a child is in grave physical danger. Juiced up by adrenaline fear, and powered by love, a mother or father can do amazing things for their child.

This weekend we got a glimpse of the powerful synergy that happens when a group of these super parents joins forces. Mike and Liz Pribaz and the Board and friends of Jack’s Army welcomed Jim Johnson and Scotty Sims, parents of Harper in Colorado,  Sara James, mother of Jacqueline in Melbourne, Australia, and researcher Dr. Edward Cooper from Houston. No one wore capes or tossed any automobiles, but one person remarked that it seemed like a gathering of the Justice League. You get the feeling that now that these parents have found each other, there’s not much they cannot do together.

 

Search, click, CONNECT

It was a fortuitous late-night Google search that located Dr. Cooper in January of 2012. Then Mike sent an email into the void, and Dr. Cooper responded within hours. That crucial connection was a game changer for the emerging KCNQ2 community. Soon Dr. Cooper and Jack’s neurologist in Chicago, Dr. John Millichap, would begin a fruitful research partnership that continues to grow.

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We learned that last year around this time there were still only a handful of cases known. Dr. Ed Cooper reports that now there are 90 published cases of KCNQ2 encephalopathy.

 

Jim Johnson joked that in his search for information about KCNQ2 he reached the end of the Internet. Along the way, he found Jack’s Army. Saturday night he thanked all the people who generously support this grassroots organization, describing how it felt to discover that he and his wife were not alone with their daughter’s diagnosis:

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Jim Johnson, Scotty Sims, Sara James Butcher, Liz Pribaz

“…that there was actually someone out there that we could talk to–I can’t tell you how much … that meant to us, to actually read Jack’s story and read that there was a doctor involved that actually was looking for answers, Dr. Cooper.  How fortunate and just how connected, even through email and on phone calls with Mike and Liz, we felt…”

 

 

Meanwhile in Australia…

Another family across the world was searching for answers too. Sara and her husband waited eight long years before their daughter Jacqui’s diagnosis was made. How did we find her story?

That’s thanks to Scotty. Scotty uses the Internet to search for patients who have a KCNQ2 mutation whose parents may have started blogs or websites—messages in the digital bottle. She is keeping a database of patients whose parents have contacted the Foundation or her directly at her Facebook page, Harper’s Warriors KCNQ2. The more patients we can find, the more families we can help, the more cases there are to study, the more quickly we can hope for treatments…

While making her Internet surfing rounds, Scotty tried a search on Google.com.au and turned up a very interesting video. A Place For Us is a 30-min documentary that aired on Australian television and marks the first major media story to put a face, a beautiful face, on KCNQ2 epilepsy. We hope it won’t be the last.

Going the Distance

Sara traveled more than 9,000 miles from Melbourne to Wheaton, Illinois, to share with us about her journey with her daughter Jacqui and to meet Dr. Cooper. It was kind of surreal, and certainly inspirational, to trace the various paths that brought all of us together. “The world is very big,” Sara acknowledged Saturday night, “but the world is very, very small.”

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Sara James Butcher shares her daughter Jacqui’s story

As a matter of fact, at the beginning of his career, Dr. Cooper was inspired by pioneering work on genetic epilepsies done by Jacqui’s doctor in Australia, Dr. Ingrid Scheffer.  She told Sara that with this trip she was heading right to the forefront of KCNQ2 research, and Sara’s been charged with bringing back a full report.

To do that, we will all travel to Houston, Texas, to visit Dr. Cooper’s laboratory and his team at Baylor. We are all eager to learn everything we can. Stay tuned for our Texas report!

 

 

 

 

 

 

 

 

 

 

 

 

Celebrate Jack’s birthday at the Village Tavern and Grill

Tavern Total UPDATE:

Jack and family just want to say a great big THANK YOU for coming out to the Village Tavern and Grill on Wednesday, March 5, to celebrate Jack’s 5th birthday.  A good time was had by all, and we raised a cool $315!

Thank you for your continued support!

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THANK YOU ALL FOR COMING OUT!

 

Jack and Matt 5bday croppedIt’s time to celebrate. Jack Wyatt Pribaz turns 5 on the 5th, a “golden birthday” if there ever was one! Join the celebration on Wednesday, March 5 at the Village Tavern and Grill , 219 S. Schmale in Carol Stream. The good folks at the Village Tavern will donate 20% of your bill to the Jack Pribaz Foundation. Be sure to bring this flyer with you:

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We realize it’s Ash Wednesday, but don’t worry. You can enjoy a fish fry basket or sandwich or even fish tacos. Kiddie menu available too.

Please come out and help celebrate and support a great cause!

 

 

 

The 5 best things we heard at the Heroes Night Gala

The 5 best things we heard at the Heroes Night Gala

Jack’s Army founders Mike and Liz Pribaz got a much-needed night off from child-care duties to attend, for the first time, the annual Heroes’ Night Gala. It was hosted by the Epilepsy Foundation of Greater Chicago and held at the Museum of Science and Industry on Friday, February 21. The program concluded with a tour of the new permanent exhibit called Science Storms, a showcase of nature’s mysteries. The exhibit’s description could easily apply to epilepsy research, a fact surely not lost on the event’s organizers: “Science Storms is a journey that takes us from wonder to inquiry, curiosity to observation, investigation to understanding.”

As Mike and Liz stood in the vortex of a virtual tornado at the end of their evening, they reflected on their top 5 whirlwind gala moments:

1. Kurt Florian gave a nod to Jack’s Army in his address. The President of the Epilepsy Foundation of Greater Chicago stood before a packed house and spoke of all of the different ways that the war on epilepsy is being waged, and he specifically mentioned the “grassroots” success of Jack’s Army! What great exposure for our little foundation in a room full of epilepsy advocates, lawmakers, clinicians, and researchers.

2. We talked with the evening’s honoree, Susan Axelrod, founder of CURE, congratulating her on receiving the Distinguished Richard N. Rovner Hero Award. We chatted with her about Jack and KCNQ2 and thanked her for inspiring us as parents and as a foundation. It was a wonderful opportunity to personally express our gratitude for the CURE’s $300,000 grant to Dr. Cooper.

3. US Senator Dick Durbin announced a $200 million appropriation that he helped set aside for the Department of Defense Peer Reviewed Medical Research Program. Some of these funds will go toward the study of epilepsy and traumatic brain injury in soldiers coming back from war. 

4. Illinois Senator Dan Kotowski, whose dad we had met and talked to in the coat check line, talked about his own connection to epilepsy (through the Danny Did Foundation) and the exciting future of medicine in this fight, including medical marijuana.

5. We were moved by the story of the winners of the Hero Award for Inspirational Commitment. Jack and Manjula Pfingston lost their son Zach to sudden unexpected death in epilepsy (SUDEP) in 2009. CURE is leading the way in preventing and finding the cause of SUDEP. All proceeds from their annual golf outing go to Camp Blackhawk for kids with epilepsy. Zach loved that camp.

Heroes Night reminded Mike and Liz what a vibrant, passionate group the epilepsy community is. The gala gave them a chance to recharge their batteries, to network, and to learn. Jack’s Army thanks the Epilepsy Foundation of Greater Chicago for putting on a great event.

To top off the night, Mike and Liz met a new friend. They were seated with Gregg Rosenthal from Mt. Prospect, a man who suffered from seizures as an adult and was eventually forced to get a portion of his frontal lobe removed. Gregg was an advocate in convincing Governor Pat Quinn to declare November epilepsy month. A dedicated golfer, Gregg pledged to attend the Jack’s Army Third Annual golf outing in July.