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Friday, June 27th, 2025
Klein Creek Golf Club
Winfield, IL

 

 

When: Friday, June 27, 2025 Where: Klein Creek Golf Club Time: 12:00 Shotgun / 6:00 Dinner & Auction Format: Four Man Scramble Registration: All registration will be available at https://jacksarmy.org/index.php/news-events/events Doors open at 10:30 on June 27th. Pricing Individual Golfer - $175 Foursome - $700 Dinner & Auction Only - $75 *Golf fees include Lunch / Dinner & Auction

Join us to celebrate 13 Years!   You all made our 11th outing amazing last year! Now it is time to take this one up to eleven (to borrow from Spinal Tap). Please join Jack and all of his friends for another day of fun on the golf course and for dinner and drinks afterwards! Space is limited so sign up on our website to reserve your foursome and/ or your spot at dinner. We don’t want you to miss out!   Auction Items & Sponsorships  Our fundraising depends greatly on auction items, raffle items, and sponsorships. If you have something to donate or want to sponsor the outing in any way, please email Mike Pribaz at: jackpribazfoundation@gmail.com   All money raised by the JPF goes to research and raising awareness for families with KCNQ2 around the world.

 

 

"We are proud to announce KCNQ2 Encephalopathy Awareness Week as passed by the Resolution of the Illinois Senate. KCNQ2 parent and advocate Rick Terven worked tirelessly with the General Assembly to pass this measure on behalf of all of the families that have loved ones who suffer from this condition".

Click Here to view the official document.

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.

 

 

 

• Peek inside Dr. Cooper’s Lab and get links to more KCNQ2 news coverage with this report from March 2014.

 

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.

• Read more about the KCNQ2 presence at last year's AES meeting.

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.

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.

[caption id="attachment_761" align="aligncenter" width="540"] AES booth all set.[/caption]

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

[caption id="attachment_772" align="aligncenter" width="508"] LED media wall, with Angela Cherry for scale.[/caption]

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.

[caption id="attachment_758" align="aligncenter" width="422"] Dads Mike Pribaz and Jim Thompson engaging docs.[/caption]

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?”

[caption id="attachment_764" align="alignleft" width="457"] Busy booth![/caption]

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.

[vimeo id="113825447" width="600" height="350"]

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.

[caption id="attachment_760" align="alignright" width="258"] Jim Thompson, Dr. Ed Cooper, Mike Pribaz[/caption]

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.

[caption id="attachment_762" align="alignnone" width="428"] Drs. Peter De Jonghe, Sarah Weckhuysen, and Ed Cooper.[/caption]

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.

One 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?

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!



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!

 

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.

   

 

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.

[vimeo id="100668652" width="600" height="350"]

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.

 

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.

[caption id="attachment_519" align="aligncenter" width="480"] The incomparable ukulele maestro Jake Shimabukuro and the amazing Jason Lent.[/caption]

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.

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!

 

 

[caption id="attachment_436" align="aligncenter" width="504"] photo courtesy Epilepsy Foundation of Greater Chicago @EpilepsyChicago.[/caption]

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.

 

 

Recently a hot topic popped up over at the Facebook page for KCNQ2 parents and caregivers. What do you say to questions and comments about your child who has KCNQ2-related epilepsy? How do you react to well-intended but unwanted advice such as “have you tried juicing?” How do you respond to observations that can send you into an emotional tailspin, such as “but he looks so normal?” What kind of answer do you give to the person who asks, “How’s your daughter doing?”

The parents had a lively discussion about their different responses for these kinds of questions. Approaches varied, but it was pretty much unanimous that the parent’s prerogative to respond or not respond always trumps the curiosity of the person asking.

While its true that parents and caregivers generally appreciate those who express concern for their child and want to be courteous and accommodating, sometimes the moment is not right or they just don’t have the spare energy to get into a conversation. One wise mom pointed out that being polite is not as important as preserving your sanity.

Perhaps the one question that most consistently flummoxed the parents was this: When someone inquires about the nature your child’s condition, how much of the complicated science do you try to explain? Many parents remarked that even when they did their best to give a crash course in KCNQ2 101, the reaction was often disappointing. Some people ask but don't really want an answer, or aren't prepared for a lengthy neurology seminar.

So here’s a handy tool for parents and caregivers to use when faced with the how-much-science question. I’m calling it the 5-Finger K-C-N-Q-2 response.

Keep it simple until you know that the person wants more detailed information. Don’t be a boring professor, trapping your audience in a lecture they didn’t realize they were signing up for. Instead, have an easy answer at the ready, such as: “Jack has a form of epilepsy caused by a genetic mutation that also affects development and muscle control.”

Check the interest level. Pause and assess whether the person is really concentrating. You might be done already. If you are, smile and thank the person for asking. Is he or she genuinely still engaged? Great! Continue with:

“No one fully understands the condition yet--it’s so new.” It doesn’t even have a proper name! This is a useful comment because it says that your child is a pioneer. He or she is not someone to feel sorry for, but someone remarkable whose case is helping to define the emerging science. The answer is honest and leaves room for people to take away a positive impression.

Question. Is the conversation still alive and kicking? You can ask, “Do you want to know more about the science?” If the answer is yes, …

“2” the website! Direct the person to www.Jacksarmy.org. If he or she is truly curious, the website will help you do the heavy lifting. You can mention the recent trip to the research lab at Baylor,  and that the media has recently taken an interest in KCNQ2-related epilepsy. There are some short news clip links on the website that tell the story. For those who want to get down to neurons and potassium channels, more detailed information is available, and we plan to add to our educational resources in the coming months. People who are genuinely motivated to understand your child’s condition can help spread the word, too.  Some may even want to know how they can offer financial support. The website can help with all of those interests.

In the meantime, if you are a parent of a child with KCNQ2-related epilepsy, continue to share your questions and frustrations and helpful suggestions over on the Facebook page. Having a private support group of parents who really understand is an important resource for you as you move forward.

 

 

My brother and his wife received some simple but powerful advice early on in their journey with Jack: “You need to avoid the high highs and the low lows,” one of Jack’s doctors told them. “Steer a middle course, and keep it steady.”

It’s easier said than done, of course, to maintain emotional equilibrium when you often don’t know which way is up. But I do think it is important and useful to think of that middle way, where a setback does not have to spell doom and a milestone achieved does not necessarily prove a miracle.

I revisit this advice a lot these days, for good reason. Many exciting developments are occurring for our fledgling KCNQ2 community: research is surging forward, the controversial cannabis-derivative therapies (from Charlotte’s Web to Epidiolex) are generating tantalizing anecdotes of relief and improvement (not to mention a ton of press that serves to increase public awareness of pediatric epilepsies), and our friend Scotty Sims’ Facebook page for KCNQ2 is welcoming new parents seemingly every day, who come together in that digital support group to share their stories, compare notes, and grow our database. Amidst this influx of new developments in the fight against KCNQ2-related epilepsy, it is perhaps wise to remember the importance of moderating expectations.

If you are a parent new to this diagnosis, especially if your child is very young, the amount of advice and information available now to you might seem overwhelming. By reading about a “miracle” marijuana cure or about the struggles of one or several older children on Facebook, you might be tempted to jump to all sorts of conclusions—positive or negative—about your child’s prognosis. But take one day at a time. Steer a middle course.

And if you are a parent whose child is a veteran KCNQ2 warrior, you can’t help but notice how different the situation is now.  A short time ago—not 24 months—we lived in the digital equivalent of radio silence about KCNQ2. Now there are multiple channels alive with conversation. Besides this website, our cause has a robust Facebook page and is on the news in Chicago, Houston, Denver, and other cities. It’s in newspapers—including this story about a boy named Eric with KCNQ2 encephalopathy we read about just yesterday, all the way from Ireland. You can learn about one family’s journey with KCNQ2 in Sara James Butcher’s new book An American in Oz and, in a more focused way, in the 30-minute documentary called A Place for Us run on Australian television. And perhaps most promising, my Google Alert that is set for KCNQ2 emails me multiple times a week about new research being published about this gene.

So steer a middle course, and know that the wind is blowing hard. We’re moving forward at quite a clip.

 

 

 

 

 

Why Walk?

[caption id="attachment_412" align="aligncenter" width="600"] Jack's Army at our first Epilepsy Walk in Wheaton, IL, May, 2009.[/caption]

Nearly 5000 people gathered on the National Mall in Washington on Saturday, March 22, for the 8^th 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!

[caption id="attachment_268" align="aligncenter" width="600"] 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[/caption]

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.

[caption id="attachment_282" align="aligncenter" width="600"] 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.[/caption]

 

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:

[caption id="attachment_277" align="alignleft" width="518"] Jim Johnson, Scotty Sims, Sara James Butcher, Liz Pribaz[/caption]

“…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.”

[caption id="attachment_278" align="aligncenter" width="551"] Sara James Butcher shares her daughter Jacqui's story[/caption]

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!

 

 

 

 

 

 

 

 

 

 

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!

[caption id="attachment_299" align="aligncenter" width="600"] THANK YOU ALL FOR COMING OUT![/caption]

 

It'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:

Eat_out_hand_out_flyer

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!