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Landon's League Foundation

Finding A Cure For CAMSAP1

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Mission Statement

Our mission is to support the development of gene therapies for rare pediatric genetic diseases and help those affected by granting adaptive equipment to help them and their families with activities of daily living.

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The many faces of the sweetest boy who loves fresh

The many faces of the sweetest boy who loves fresh air, snow angels, and a sledding adventure! ❄️

(We are hoping to share a research update soon as the Covid pandemic has delayed progress. Thank you for being supportive and patient!)

#landonsleague #landonsleaguefoundation #camsap1 #findacure #lissencephaly #smoothbrain #cp #specialneeds #raredisease #nonprofit #stlouisnonprofit #rarediseaseresearch

Happy 5th Birthday to our happiest boy, Landon! W

Happy 5th Birthday to our happiest boy, Landon!

We adore your belly laughs, your excitement to “read a book”, your love for water and swimming, your beautiful singing—especially with sis, and your contagious zest for life!

And today, you are FIVE. You are an inspiration to us. We know the last year has been tumultuous with seizures and their side effects. But you, sweet boy, are the strongest and never stopped smiling.

Birthdays are momentous for you. Celebrate BIG! It was just over 4 years ago that we heard “there is significant concern for no walking or talking”. There were no answers and so many unknowns for the future. We often heard the three dreaded words: “wait and see”. Wait and see. I SEE YOU 5 years later with 6 weeks of no seizures, learning new words, riding your bike, enjoying the finest foods, mastering new toys and laughing at the worst dad jokes.

Happy happy birthday to you!!

#landonsleague #camsap1 #findacure #epilepsysucks #seizurefreedom #lissencephaly #smoothbrain #cerebralpalsy #raredisease #specialneedsfamily #birthdayboy

‘Tis the season to be jolly! 🎅🏼 (And cel

‘Tis the season to be jolly! 🎅🏼

(And celebrating 1 month of seizure freedom!!)

Wishing you and your family a very Merry Christmas!

#landonsleague #camsap1 #findacure #epilepsysucks #seizurefreedom #lissencephaly #smoothbrain #cerebralpalsy #raredisease #specialneedsfamily #santafrank #specialneedschristmas

It’s #GivingTuesday! Created in 2012, it was ori

It’s #GivingTuesday! Created in 2012, it was originally an idea that encouraged people to do good. While you can choose to make a monetary donation to nonprofit organizations close to your heart, we encourage you to focus on making someone smile or helping someone out today—tangible or not. Everyone has something to give.

We know it’s been awhile since we shared an update on our Landon. The truth is that we’ve had a lot to process in the last few months related to Landon’s health.

Earlier this fall, Landon had an increase in seizures despite adding a new medication. The increase progressed quickly to daily seizures with no known cause or reason. We could speculate that it might be related to a growth spurt or pain related to high muscle tone (think of involuntarily contracting your legs or arms and getting “stuck”) or difficulty sleeping, etc. Each of these factors becomes cyclical contributing to the next making it very challenging to pinpoint a cause but also to gain seizure control.

Additionally, the most upsetting part of this increase in seizures has been the increase in Landon’s muscle tone related to his joints despite our best efforts with therapy and weight-bearing exercises (stander, stretching, bike riding) as well as Botox injections. After a recent orthopedic appointment, it was determined that the high muscle tone has caused Landon’s hip bone to significantly migrate away from the hip socket. As a result, he needs surgery within the next 5 months to correct or it’s likely that his high tone will cause his hip to migrate “out of socket” completely. This would be painful and much more complex.

As his parents, we have tough decisions to make in the next few months with lots of risks to take into consideration. There is no easy answer.

Please keep Landon & those affected by #CAMSAP1 in your prayers with a specific prayer request for seizure freedom. Today marks 1 WEEK of seizure freedom! We would love nothing more than to be able to share 1 month, 2 months etc again.

Until then, we’ll continue to focus on enjoying what makes Landon smile: the most magical time of year of Christmas lights and tinsel!

It’s right here, Ray. It’s looking at me. [S

It’s right here, Ray. It’s looking at me.

[S]he’s a cute little spud, isn’t she?

[S]he slimed me, I feel so funky…

Happy Halloween! 🚫👻

#landonsleague #landonsleaguefoundation #findacure #CAMSAP1 #nonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #inclusionmatters #inclusivecostume #wheelchaircostume #halloweeninclusion #halloween #halloweencostume #ghostbusters #specialneedsjourney #specialneedshalloween #specialneedssiblings

To know how to wait is the GREAT SECRET of SUCCESS

To know how to wait is the GREAT SECRET of SUCCESS - Joseph De Maistre

In February 2018, we received the results of Landon’s whole exome genetic sequencing that revealed his CAMSAP1 gene mutation was a “candidate gene” - meaning it might be the cause of his condition but could not be verified.

“We have now identified 7 individuals with this condition in families from the USA, Europe, Turkey and Palestine. Our genetic and clinical studies have enabled us to develop a clear understanding of how the condition affects children during development and early life, and confirms CAMSAP1 gene variants as the cause. Many new developmental disorders such as this continue to be discovered which are caused by alterations (or ‘gene variants’) in the code of a specific gene, which are the instructions that control how infants grow and develop. Understanding the underlying genetic cause of a disorder is important as it provides a diagnosis and information for affected families and ultimately, following extensive research, may enable new therapies and treatments to be developed. Now that the genetic cause of this condition is confirmed, we’re continuing with a wide range of molecular studies. This is providing important information regarding the normal role of CAMSAP1 in our bodies, which was poorly understood before our research. It is also revealing how the CAMSAP1 gene alterations we’ve identified impair the function of the CAMSAP1 molecule, and lead to the condition. Our aim is to continue research in all of these areas to help doctors by providing improvements in the clinical management of affected children, and ultimately identify new avenues for treatment of the condition.

All the very best,
Dr. Crosby
Professor of Human Genetics”

🧬 After 3 years of global networking with physicians and researchers, Landon’s genetic “variant of uncertain significance” is now considered a DISEASE GENE! Being able to classify CAMSAP1 as a “disease gene” is a tremendous step that allows future CAMSAP1 research to be eligible for grants from agencies such as the National Institute of Health (NIH).👏🏻

THANK YOU to all of our supporters who have helped us achieve this milestone!

⛳️ 24 hours left to sign up! ⛳️ Registrat

⛳️ 24 hours left to sign up! ⛳️

Registration for “Land-on the Green” golf scramble ends tomorrow FRIDAY, 9/17/21!

We have a great turnout and STILL HAVE A FEW FOURSOMES LEFT! Registration in advance is required. Thank you to all those who have registered.

-Shotgun start at St. Peters Golf Club
-$500 foursome / $125 individual (18 holes, cart 🛺, dinner by Stefanina’s, & Landon’s League gift bag)
-Chance to win prize(s) for "Longest Drive", "Most Accurate Drive", and two "Closest to the Pin" contests.

All proceeds benefit Landon’s League Foundation.

Register at www.landonsleague.com. To sponsor or volunteer, contact landonsleaguefoundation@gmail.com.

12 days left until the first Blues 🏒 preseason

12 days left until the first Blues 🏒 preseason game

AND…

Just 5 days remaining to register for the ⛳️ Land-On The Green Golf Scramble ⛳️. Register your team today! (LINK IN BIO)

"Billy, the reason the game is called ‘golf’ i

"Billy, the reason the game is called ‘golf’ is because all of the other four-letter words have been taken." - Leslie Nielsen

…including, but not limited to, “ABLE”!

Landon and his cousin, Owen, were ABLE to PLAY GOLF, and they each had a blast creating this to HELP spread the word about our upcoming tournament.

- Deadline to register is 09/17/2021!
- Please note that we have changed the shotgun start time to 9:30am. Registration begins at 8:00am.

We HOPE you enjoy our “Jim Nance Meets Happy Gilmore Turned St. Louis Blues Fan” golfing montage and look forward to seeing you there!

Your networking and fundraising to-date has given us the opportunity to fund the creation of a special kind of stem cells right here in St. Louis at WashU, fund a mouse model of CAMSAP1, fund a special needs grocery cart at Dierbergs, and provide adaptive equipment for a CAMSAP1 family.

Thank you for sharing!

🍎 Hip, Hip, Hooray! It was back to school today

🍎 Hip, Hip, Hooray! It was back to school today! 🍎
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Landon will continue with the Homebound program in pre-K until he is vaccinated for Covid. He will go to school 1 day per week to work with his therapy team and teacher. As usual, he was all smiles at school and our little rockstar fell asleep within 5 min on the ride home. 😁
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#landonsleaguefoundation #landonsleague #camsap1 #findacure #backtoschool #epilepysucks #specialeducation #specialneedsfamily #lissencephaly #smoothbrain #cerebralpalsy #rare #raredisease

Don’t play golf but interested in supporting our

Don’t play golf but interested in supporting our mission? Sponsor our “Land-on the Green Golf Scramble” as an individual, organization, or corporation. 😃
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Your networking and fundraising to-date has given us the opportunity to fund the creation of a special kind of stem cells right here in St. Louis at WashU, fund a mouse model of CAMSAP1, fund a special needs grocery cart at Dierbergs, and provide adaptive equipment for a CAMSAP1 family.
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Thank you for sharing!
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #specialneedssiblings #genemutation #raredisease #rare #charitygolf #stlouisgolf #golftournament #stlouischarity

We finally had cool weather to get out and enjoy a

We finally had cool weather to get out and enjoy a trail walk! ☀️
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We’ve been hesitant to take Landon out in the heat due to a side effect of poor temperature regulation with his new epilepsy medication. Landon celebrated 1 MONTH of seizure freedom over the weekend!!
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Unfortunately, his EEG report did not provide the results that we were hoping for. 😔 His EEG showed 2 new areas of his brain having epileptic waves even though no seizures were noted during the EEG itself. This doesn’t change Landon’s medications. It just means that we have some areas to watch and we’ll continue to be thankful for each seizure-free day!
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It’s appointments such as these in our journey with CAMSAP1 that further fuels our drive to continue fundraising for ongoing CAMSAP1 research endeavors in hopes for a gene therapy cure.
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⛳️ 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐚𝐬 𝐚𝐧 𝐢𝐧𝐝𝐢𝐯𝐢𝐝𝐮𝐚𝐥 𝐨𝐫 𝟒-𝐬𝐨𝐦𝐞 𝐟𝐨𝐫 “𝐋𝐚𝐧𝐝-𝐨𝐧 𝐭𝐡𝐞 𝐆𝐫𝐞𝐞𝐧” 𝐆𝐨𝐥𝐟 𝐒𝐜𝐫𝐚𝐦𝐛𝐥𝐞 𝐨𝐧 𝐅𝐑𝐈𝐃𝐀𝐘, 𝐎𝐂𝐓𝐎𝐁𝐄𝐑 𝟖, 𝟐𝟎𝟐𝟏! 𝐀𝐥𝐥 𝐬𝐤𝐢𝐥𝐥 𝐥𝐞𝐯𝐞𝐥𝐬 𝐚𝐫𝐞 𝐰𝐞𝐥𝐜𝐨𝐦𝐞! ⛳️ LINK IN BIO!
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #specialneedssiblings #genemutation #raredisease #rare #charitygolf #stlouisgolf #golftournament #golfscramble #stpetersgolf

Because of Landon’s increase in seizures, we wen

Because of Landon’s increase in seizures, we went for a routine EEG today. We have not noticed a seizure at home in nearly 4 weeks after adding another epilepsy medication. 🥳 Here’s to wishing and praying for a good EEG report with no significant changes! 🤞🏻🤞🏻🤞🏻
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #specialneedssiblings #genemutation #raredisease #rare

14 seizures in 6 days. . I (Landon’s mom) have s

14 seizures in 6 days.
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I (Landon’s mom) have started to type this post to share on update on sweet Landon multiple times in the last week. It always came to a stop with a feeling of defeat and, frankly, disbelief as the seizures continued to add up. How did we go from nearly 13 months of seizure freedom to having seizures near daily? 😭 Perhaps the hardest mental battle to overcome here is the loss of control. What happened? Regardless, after 5 seizures in 1 day and some reluctance, we opted to add a 2nd medication for seizures. This has its own concern as epilepsy medications are known for ugly side effects, such as a loss of appetite, dehydration, and kidney stones.
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Additionally, since seizure activity has increased over the last several months, we have noticed an increase in Landon’s tone, or that his muscles in his arms and legs are “tight”/contracting. In an effort to reduce the tone and keep him more comfortable, Landon received his first round of Botox injections in his legs. Botox injections allow a specific muscle to be targeted. Many of you may be wondering why he is receiving Botox. Simplistically, Botox works by blocking the chemical signal between nerves and muscles that make the muscle tighten or contract. As a result, Landon is able to receive some relief from spasticity which can contribute to pain and muscle stiffness. It can take up to 4 weeks to see results so we will follow up with his pediatric rehabilitation doctor later this month. If they do work, he will receive every 3-6 months and we will try to target other areas such as his arms.
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At the time of sharing this update, Landon is 4 days seizure-free. We will aim for 5 days tomorrow and continue to look forward to celebrating more seizure-free days. Thank you all for your continued love and support!
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Pictures: Landon is poppin’ wheelies while waiting for the procedure suite for his Botox at St. Louis Children’s hospital. And he never stops smiling.

Mark your calendars 📆 for our “Land-On The Gr

Mark your calendars 📆 for our “Land-On The Green Golf Scramble”, on Friday, October 8, 2021! Registration is open now (registration link in the comments below).

We are graciously seeking tournament sponsorships, and we truly appreciate any donations that will help us make this tournament a success!

Cost: $125 per golfer (18 holes, cart 🛺, dinner, & souvenir)
Where: St. Peters Golf Club
200 Salt Lick Rd.
St. Peters, MO 63376

#camsap1 #landonsleague #findacure #specialneedsfamily #givingback #golfing #StLouisMissouri

Raise your hand if you like 3 day weekends 🙋‍

Raise your hand if you like 3 day weekends 🙋‍♂️🙋‍♀️…
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Mark your calendars 📆 for our “Land-On The Green Golf Scramble”, on Friday, October 8, 2021! Registration is open now (👆🏻 LINK IN BIO!).
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We are graciously seeking tournament sponsorships, and we truly appreciate any donations that will help us make this tournament a success!
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Cost: $125 per golfer (18 holes, cart 🛺, dinner, & souvenir)
Where: St. Peters Golf Club
200 Salt Lick Rd.
St. Peters, MO 63376

Happy Independence Day! 🇺🇸 . . . #landonslea

Happy Independence Day! 🇺🇸
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #specialneedssiblings #genemutation #raredisease #rare

It’s been a day spent appreciating our own super

It’s been a day spent appreciating our own super dad and founder’s endless dad jokes. Your unwavering hard work and dedication to find a cure for Landon and other children with CAMSAP1 mutations is inspiring!

Happy Father’s Day.
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #superdad #specialneedsdad #genemutation #raredisease

While the special needs community is no community

While the special needs community is no community that we chose to be a part of, we are so lucky to have crossed paths with other special needs families in St. Louis. We often rely on other families for support, insight, and guidance. Particularly, we are so grateful to have met families like Bubba’s family, who have not only been a great resource, but who also generously gifted his outgrown bike recently. Thank you so much, Bubba, for thinking of Landon!!! ♥️♥️
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If you’ve been following our journey through fundraising, research progress of Landon’s gene mutation, and day-to-day life, you know that Landon has been blessed with seizure freedom for extended periods of time. This has not been the case recently. As Landon’s parents, we are faced with difficult decisions moving forward to gain control again. Please say a prayer for Landon to have a calm brain and for the seizures to end. Even weekend seizures 😣 couldn’t hold back smiles during a backyard bike ride! 🚲
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#landonsleague #landonsleaguefoundation #CAMSAP1 #findacure #epilepsysucks #nonprofit #stlouisnonprofit #lissencephaly #smoothbrain #CP #cerebralpalsy #specialneeds #specialneedsfamily #specialneedsjourney #ambucs

After an unintentional, yet much-needed, break fro

After an unintentional, yet much-needed, break from social media to recharge and adjust as a family of 4, we are back with a few updates to share!
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With MUCH anticipation, the results of the current CAMSAP1 research related to our efforts and collaboration over the last 3 years with researchers in both the U.S. and U.K. will be submitted for peer review in the coming weeks. It will highlight the findings from the stem cells we helped create, elaborate a bit more on the mouse model, and will compare the striking similarities between the 8 children known to be affected worldwide. Researchers and field experts will critique the submission, changes (if any) will be made, and, ultimately, the research will be published. Another important goal of the research is to recognize CAMSAP1 as a disease gene if two copies are affected by mutation. Undoubtedly, we are eager to share when available!
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Additionally, after an upcoming meeting with researchers, we will be able to determine our next fundraising target to assist the team here in the U.S. and their work towards the potential gene therapy for CAMSAP1. Like many other areas in our day-to-day, the effects of the COVID pandemic impacted the progress due to staffing, shut-downs, etc.
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And our WHY...
We’re sad to share that our 13 months of seizure freedom came to an end earlier this month when Landon had a cluster of multiple seizures in 1 day with additional seizures since then. Our other known CAMSAP1 family in the U.S. has also been struggling with seizure control. While it never gets easier to helplessly watch your child have a seizure, it is our WHY. Thus, it is our motivation and mission to continue to communicate, collaborate, and fundraise for the necessary research to help those affected by CAMSAP1 gene mutations.
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⛳️Our next big fundraising opportunity, “Land-on the Green Golf Scramble” has been moved to OCTOBER 8, 2021.⛳️
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Registration is open at landonsleague.com. If you or your business/organization is interested in sponsoring or volunteering, please contact us at landonsleaguefoundation@gmail.com.

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