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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The 5-Finger Response—Explaining KCNQ2

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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.

 

 

 

 

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!

 

 

 

 

 

 

 

 

 

 

 

 

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.

CURE awards new epilepsy research grants

CURE awards new epilepsy research grants

In case you didn’t know it, Citizens United for Research in Epilepsy (CURE) is the nation’s largest independent, private funding agency for epilepsy research. Since CURE began in 1998, they have supported 151 projects with more than 26 million dollars. On February 13, 2014, CURE awarded six new research grants in their drive to accelerate epilepsy science and find a cure. And they report a surge in applications this year—a record 200 competitive proposals.

I find it heartening to imagine so many great minds in so many laboratories hard at work. The answer is out there somewhere. This is a good moment to reflect on what it means for Jack’s Army that just last year that our own Dr. Edward Cooper claimed a CURE prize, the “Rock the Block for Pediatric Epilepsy Research Award.”

Let’s consider some numbers.

If you click on the Cure Epilepsy web page, you see a little icon of stick figures. Below the image it says starkly “1 in 26,”  a reminder of how many Americans will develop epilepsy at some point in their lifetime. One in 26. That’s a lot of people. It’s an urgent problem.

stckexch1standoutI don’t know if more than 26 cases of KCNQ2 encephalopathy are known yet, and that’s a global count. Understandably, some might wonder why, among all the deserving research proposals that CURE could choose to fund, they would select Dr. Cooper’s, which targets such a rare form of epilepsy. But Dr. Cooper’s success in vying for coveted grant funds (which went largely into building mouse models that carry three different versions of KCNQ2 mutations) means he made a strong case for the translatability of his research.

Dr. Cooper’s research is that promising—not just for the rare group of children like Jack, but for the basic understanding it offers about the essential role potassium channels play in the function of neurons. And that knowledge potentially helps a lot more of those 1-in-26 Americans.

Read more about Dr. Cooper’s ongoing work in The Cooper Laboratory at the Baylor College of Medicine here.