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Finding A Cure For CAMSAP1

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Category: Research Updates

Research Updates

LAND-ON THE GREEN GOLF SCRAMBLE

February 4, 2021February 4, 2021 Joe Walsh

LAND-ON THE GREEN GOLF SCRAMBLE ⛳️ SAVE THE DATE ⛳️ Join us for the 1st ever "LAND-ON THE GREEN GOLF SCRAMBLE", hosted by Landon's League Foundation. Funds raised to support… Continue reading LAND-ON THE GREEN GOLF SCRAMBLE

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Announcements, Research Updates

CAMSAP1 RESEARCH UPDATE!

July 8, 2020August 6, 2020 Joe Walsh

🎉 Pardon the long post ahead, but we have a very exciting CAMSAP1 research update regarding advancements made studying Landon’s mutation on the CAMSAP1 gene 🎉

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Research Updates

Rare Disease Day: Great News + Awareness

February 29, 2020March 1, 2020 Joe Walsh

The presentation above was delivered and recorded at the Arya Foundation's 2020 Disability Awareness Convention on 02/23/2020. Complex topics like genetics are difficult to simplify. It is even more difficult… Continue reading Rare Disease Day: Great News + Awareness

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Research Updates

Two Minutes in the Sin Bin – Sports Media Gives Their Hot Take

November 3, 2019November 3, 2019 Joe Walsh

A special thank you for the shoutout Chris Hrabe (@chrabe)! Check out the audio clip from the November 1st Sports Open Line show on KMOX below: The comparison of Landon's… Continue reading Two Minutes in the Sin Bin – Sports Media Gives Their Hot Take

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Research Updates

BIG, Big Gene Update…

October 30, 2019January 1, 2020 Joe Walsh

Imagine going to your practitioner and having lab tests ordered. You receive the results, but you AND the ordering practitioner have no idea what the results mean. Imagine what it… Continue reading BIG, Big Gene Update…

Tagged #camsap1, #charity, #findacure, #genetherapy, #landonsleaguefoundation, #nonprofit, #rare, #specialneeds2 Comments

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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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  • LAND-ON THE GREEN GOLF SCRAMBLE June 11, 2021 St. Peters Golf Club, 200 Salt Lick Rd, St Peters, MO 63376, USA

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At some point in the last 3 years, you may have se At some point in the last 3 years, you may have seen our posts about raising awareness for alphabet-soup diagnoses that Landon and others with CAMSAP1 gene mutations may have had to come to grips with, all as part of a #raredisease.
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On this #rarediseaseday, we encourage you to scroll through your feed a little slower and take a few minutes to read about the multitude of rare diseases that your family, friends, acquaintances, coworkers, etc may share posts about.
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Over the last 4 years, we’ve come to grips about what it means to cope and live with a #raredisease while still focusing on momentum to learn more about our son’s ever-so-rare unnamed disease caused by his CAMSAP1 gene mutation. Landon is 1 of 7 identified globally with a CAMSAP1 mutation. The mutation causes a myriad of diagnoses that many people may or may not have heard of—cerebral palsy, epilepsy, ‘mixed tone’ with hypotonia and hypertonic, cortical vision impairment, lissencephaly, cerebellum hypoplasia, agenesis of the corpus callosum, dysphasia, global developmental delay. Have you heard of these?
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As perfectly worded by a fellow lissencephaly family (@alexs_amazing_adventure) in honor of Rare Disease Day...
🧬 Social media groups tend to have more advice and day-to-day experience than doctors.
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🧬Few people can pronounce the word (or diagnoses) that is forever etched in your mind and rules your life.
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🧬You find yourself having to describe your child’s condition using only conditions that people have heard of because the true diagnosis means very little—especially true for insurance companies!
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🧬The biggest blessing is connecting with other families who have similar diagnoses and they become your closest friends, for life.
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Albeit stepping into the rare community with Landon’s diagnoses has brought its challenges, Landon is a resilient, contagiously happy, (Duke’s Shack) BBQ-loving 4 year old who has taught us more about inclusion, love, and life.
The second Monday in February is International #Ep The second Monday in February is International #EpilepsyDay. Today is a day marked to promote awareness and highlight the difficulties faced by people affected by epilepsy, their families, and carers.
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Epilepsy affects some 50 million people around the world. In 6 out of 10 people, doctors don’t know the cause of their epilepsy. For many of these people, it is just part of how they are made that makes them more likely to have a seizure. As the saying goes, “you learn how long 30 seconds really is when you are watching your child have a seizure”.
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In those affected by a CAMSAP1 gene mutation, epilepsy occurs due to non-stable electrical connections within the brain. Those affected by CAMSAP1 mutations also have strikingly similar brain abnormalities.
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As of today, we are blessed and pleased to share that Landon has 10+ months of seizure freedom, and there is not a single seizure-free day that we take for granted. We know the seizure monster is ugly and unwelcomed. We’ve included a look at a few of Landon’s EEG pictures from years past.
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And so on this day, we ask you to please consider a prayer of strength and comfort for those living with epilepsy and their families, especially Landon’s cousin, Hailey, as well as Newt and our other CAMSAP1-affected families. Pray for seizure freedom, rest, and calm brain waves.
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #CAMSAP1 #findacure #epilepsy #seizurefreedom #epilepsysucks #genetherapy #genemutation #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #specialneedsfamily #specialneedsjourney #specialneedsmom #specialneeds
⛳️ SAVE THE DATE! ⛳️
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We’re excited to share a new safe and socially distanced fundraiser for 2021! Landon has been practicing for years 😉...
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“LAND-ON THE GREEN GOLF SCRAMBLE”
WHEN: Friday, June 11, 2021 
WHERE: St. Peters Golf Club
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Hosted by: Landon’s League Foundation
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Assemble your foursome today! Stay tuned FORE more details!
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #CAMSAP1 #findacure #epilepsy #seizurefreedom #epilepsysucks #genetherapy #genemutation #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #specialneedsfamily #specialneedsjourney #specialneeds #fundraiser #charityfundraiser #stlouisfundraiser #golfscramble #holeinone
Where did January go? . 2021 has been off to a gre Where did January go?
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2021 has been off to a great start! In the last days of December, we found out that we received insurance approval for Landon’s very own personal eye-gaze communication device!! We are gratefully ecstatic for our speech therapists throughout the years (you know who you are!) that introduced Landon at an early age and our insurance company for recognizing the necessity for alternative ways to communicate. We know how hard these devices can be for approval 🙏🏻.
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We have a road ahead of us as we continue to introduce new vocabulary—consistency has always been key for Landon. We started with meal time as he has been encouraged over the years to use voice-recorded switch buttons during a meal to tell us if he would like more to eat. Being food driven 😁, Landon has been doing wonderfully at meals telling us “bite” and “drink”.
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His new Tobii Dynavox is a game-changer as he does require full assistance with all food and drinks. Since some of you may follow our IG stories, you may have seen that we use a Vitamix blender to blend his meals to purees allowing him to eat what we eat on a pureed diet.
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In this video (shared previously in our stories), a hungry Landon is “patiently” waiting for Mom to make his lunch. While it adds some pep to our steps in the kitchen, it brings us such joy!!!!
HAPPY 4TH BIRTHDAY TO OUR SWEET BOY!! . The apple HAPPY 4TH BIRTHDAY TO OUR SWEET BOY!!
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The apple of our eye. The daily laughter we all need. The endless smiles on any day. And, the BEST, you never ever ever miss hearing a smile and returning the favor! (Yes, he is an expert at hearing smiles 🥰).
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We celebrated over the weekend with his new birthday sled 🛷, a whopping 1/4” snow 😂, and chocolate cake! Thank you for being you—we love love love you!
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #CAMSAP1 #findacure #epilepsy #seizurefreedom #epilepsysucks #genetherapy #genemutation #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #specialneedsfamily #specialneedsjourney #specialneedsmom #birthdayboy #specialneedsbirthday #funboyfloats @funboy
Find a group of people who challenge and inspire y Find a group of people who challenge and inspire you; spend a lot of time with them, and it will change your life. — Amy Poehler
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While 2020 was a year that we won’t forget, we are deeply grateful for being the 2020 beneficiary of @happy2givestl 
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In December, we were presented with $25,000 as a result of Happy2Give’s fundraising! Thank you for your generosity, time, energy, devotion, motivation, and socially distanced fundraising prowess! The best part about having great friends is that they bring new energy, especially during a pandemic. Happy2Give’s vision for Landon’s League Foundation went above and beyond, perfecting a socially distanced golf tournament and hosting a virtual trivia night. 
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We, again, are profoundly thankful for you!
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #CAMSAP1 #findacure #epilepsy #seizurefreedom #epilepsysucks #genetherapy #genemutation #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #specialneedsfamily #specialneedsjourney #specialneeds #happytogive #happy2give #happy2givegivingpartner
In case you missed it... . We made a BIG announcem In case you missed it...
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We made a BIG announcement at our recent fundraiser...
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We are excited to introduce the only other known child in the United States with a CAMSAP1 gene mutation to-date. Meet Dracarys, or “Newt”! Newt is 16 months old and lives with his family in Texas.
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The power of social media is INCREDIBLE as this was how we were first introduced to Newt’s family! After our introduction, we were able to confirm with review of genetic results by our research team. Just amazing!
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Please welcome Newt and his family to our organization’s efforts to find a cure for CAMSAP1. 
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #CAMSAP1 #findacure #epilepsy #seizurefreedom #epilepsysucks #genetherapy #genemutation #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #specialneedsfamily #specialneedsjourney #specialneeds
IMPORTANT: PLEASE CHECK YOUR EMAIL FOR ACCESS TO T IMPORTANT:
PLEASE CHECK YOUR EMAIL FOR ACCESS TO THE VIRTUAL EVENT.
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Tonight’s the night! The 3rd Annual “A Night at the Mouse Races - Virtual Edition” will begin promptly at 7:00PM CST! (If you are not able to locate the email, please message us.)
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Grab a drink, snacks 🍿, and make yourself comfortable for night of laughs and a few surprises!! 👏🏻
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
Hey you! It’s our #blackfriday Fundraiser Sale, Hey you! It’s our #blackfriday Fundraiser Sale, for 3 more days! Registration has been discounted to $2️⃣5️⃣! 🎉
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A 2020 Landon’s League Foundation t-shirt is included with each entry as is a chance to win $25,000* by correctly predicting ALL seven lanes for which the winning mouse will reside, respectively!
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To submit your entry, simply fill out the form (linked in the comments section below). A link to watch the event will be published closer to the 12/12/2020 contest date – it will be as simple as a “click-to-view” video!
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Don’t forget about our Referral Contest cash prize to the top three individuals mentioned the most - invite your friends and family to register:
💵 1st Place receives $100
💵 2nd Place receives $75
💵 3rd Place receives $50
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(Proceeds benefit Landon's League Foundation whose 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.)
🎵 It’s the most wonderful time of the year. . 🎵 It’s the most wonderful time of the year.
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🎄Tinsel? ✔️ Lights? ✔️ Shiny beads? ✔️ Lighted ornaments? ✔️😁🎄
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It’s Landon’s favorite season! 
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Have you heard about our BLACK FRIDAY SALE for our upcoming [virtual] fundraiser? $25 entry includes a t-shirt and a chance to win $25,000!! Register at our LINK IN BIO! Only 5 days left! 
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #stlouischarity #camsap1 #findacure #epilepsy #genetherapy #fundraiser #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #CVI #corticalvisionimpairment #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
📣 Please Pardon the Interruption 📣 . We are 📣 Please Pardon the Interruption 📣
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We are ECSTATIC to announce that the “Virtual Edition” of our 3rd Annual 🏁 “A Night at the Mouse Races”🏁 will feature TWO of St. Louis' local broadcast personalities!  Both @chrishrabe of “The Chris Hrabe Show” on “Scoops with Danny Mac" as well as Mr. Mark Ellebracht, News Director of The Big Z - 107.1 FM, will be co-hosting the event.
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Thank you to all of the sponsors and donors who have helped make this event possible - @happy2givestl, Northwestern Mutual - Doug Berry Group, @totalaccessurgentcare, Ms. Donna Raymon, Vernon & Cindy Mansfield, Litwin Law - Chicago, @granitecitycrevecoeur, @stefspizza, SE Energy, Bowlero, and Steven & Katy Fries!
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Stay tuned for more exciting updates as we “squeak” 🐭  closer to the event...contest/event registration LINK IN BIO!
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
Bragging moment! This should put a smile on your f Bragging moment! This should put a smile on your face! 😁
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(Dear Landon’s beloved physical therapists, we apologize that he’s not wearing his AFOs here as he refuses to move his legs in them with his #totallytoddler stubbornness 😁.)
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#PROUDPARENTS #landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
⏰ 2 weeks remaining to register! ⏰ . The 2020 ⏰ 2 weeks remaining to register! ⏰ 
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The 2020 Landon’s League Foundation t-shirt design is here! By popular vote, YOU'VE decided this vintage navy color!
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This year's design was inspired by our global 🌎  outreach and international collaboration with doctors, researchers, and families with affected loved ones throughout the world who are focusing on researching the unnamed condition caused by CAMSAP1 and creating a promising gene therapy.
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This shirt is included with your registration for our 3rd annual “A Night at the Mouse Races” 🐭.
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If you have not registered, please do so to guarantee your shirt size. Link to register is in bio!
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
@happy2givestl ・・・ TRIVIA IS TODAY 🎉 That @happy2givestl
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TRIVIA IS TODAY 🎉 That's right, the Happy 2 Give Trivia Night (Virtual Edition) - 6th Annual has finally arrived. Who's pumped?! We assume you all raised your hands 😉 Frankly, we couldn't be more excited to have as many of you register as we did given the unprecedented year this has been and the circumstances we find ourselves in. We're looking forward to a fun time together safely apart 😁

If you're playing, please check out the following instructions to make participation as smooth as possible today 😊

Start off by logging on through the Zoom link we sent your team via email. Please be sure to share with any team member who may not be in the thread.

The Zoom room opens at 6:30p and trivia starts promptly at 7p.

Upon entering the event, click the rename button to change your name to “Team Number + Last Name, First Name.” 

Ex: 5 Smith, John. This will help us to ensure your team is placed into the appropriate breakout room 

You will want to enable speaker view so that you see the question slides.

If you experience technical issues during the event, or have trouble logging in, reach out via one of the following methods:

- Zoom chat to Mike Menne
- Call or Text Janice Holt at 314-249-3149
- Email Janice Holt at happytogivestl@gmail.com

Also, if you have not already done so, make sure you buy your ticket to participate in the Older/Younger game. This will be an audience participation game in which players will indicate which item is older or younger by turning the appropriate direction. This will be an elimination-style competition viewed via the gallery mode. The prize for the winner is wine tasting for four at Defiance Ridge Winery. Older/Younger game tickets may be purchased here: https://event.gives/happytrivia/items/130912

If you have any other questions, just let us know. We look forward to seeing everyone! 

Proceeds will go towards Happy 2 Give and our 2020 Giving Partner @Landons_League.

#Happy2Give #HappyToGive #H2G #StLouis #STL #STLmade #GiveSTL #STLserves #STLstrong #314 #314Together #charity #STLcharity #nonprofit #STLnonprofit #volunteerSTL #helpingothers #inthelou #AllInThisTogether #landonsle
The 2020 Landon’s League Foundation t-shirt desi The 2020 Landon’s League Foundation t-shirt design is here! 🎉 year And, once again, YOU decide the color!
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Our 2020 t-shirt design is included with your registration for our 3rd annual “A Night at the Mouse Races”. The design emphasizes the global 🌎 outreach of our organization in the last year with collaboration of both doctors and researchers around the world who are focusing on researching the unnamed condition caused by CAMSAP1 🧬 as well as identifying other affected families.
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Vote for your favorite t-shirt color—LINK TO POLL IN BIO! Voting closes in just 3 days. The t-shirt color with the most votes will be yours with paid registration!
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If you have not registered, please do so to guarantee your shirt size.
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
We are squeaking closer to our 3rd Annual "A Night We are squeaking closer to our 3rd Annual "A Night at the Mouse Races" Virtual Edition on December 12th!  Registration is open through 11:59pm on December 1st (#linkinbio). Guess the correct sequence of all 7 winners (to be determined the night of the races) and WIN $25,000!
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As an added bonus, there is a Referral Contest cash prize to the top three individuals mentioned the most - invite your friends and family to register:
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1st Place receives $100
2nd Place receives $75
3rd Place receives $50
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Proceeds benefit Landon's League Foundation whose 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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(WE DO NOT OWN RIGHTS TO CONTENT OR MUSIC.)
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#landonsleague #landonsleaguefoundation #nonprofit #stlouisnonprofit #camsap1 #findacure #epilepsy #genetherapy #virtualfundraiser #raredisease #lissencephaly #smoothbrain #cerebralpalsy #socialdistancing #covidsucks #nonprofit #mouseraces #lottery #grandprize #specialneedsfamily #specialneedsjourney
OOOOOH. The clawww. . I have been chosen. 🚀 . W OOOOOH. The clawww.
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I have been chosen. 🚀
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We hope everyone had a safe and healthy Halloween! We love seeing all of your costumes!
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#LandonsLeague #CAMSAP1 #findacure #raredisease #specialneeds #neverlosehope #lissencephaly #smoothbrain #stlouischarity #cerebralpalsy #genetherapy #specialneedsfamily #specialneedsjourney #inclusion #halloweeninclusion #wheelchaircostume #toystorycostume
Need some extra holiday cash? 💰 Register for Need some extra holiday cash? 💰 

Register for our 3rd annual "A Night at the Mouse Races" - Virtual Edition! Then simply ask friends, family, coworkers, etc. to join and register for the event. Tell them to list your name on their contest entry form. The top 3 registrants with the most referrals bring home cash!
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See the LINK IN BIO for contest entry.
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#LandonsLeague #CAMSAP1 #findacure #raredisease #specialneeds #fundraiser #nonprofit #nonprofitfundraiser #stlouisnonprofit #charity #neverlosehope #lissencephaly #smoothbrain #stlouischarity #stlouisfundraiser #cerebralpalsy #genetherapy #specialneedsfamily #specialneedsjourney
Just a friendly reminder from our creative artist Just a friendly reminder from our creative artist 🎨 that November is National Epilepsy Awareness Month. The journey of managing epilepsy can be hard with each seizure-free day being a gift! Landon recently celebrated 7 months of #seizurefreedom and worked hard painting his annual pumpkin for the #purplepumpkinproject for the @epilepsyfdn. It’s proudly displayed on our front porch. 😁
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As a reminder, it’s less than 2 months until our annual (biggest) fundraiser! Register now for our 3rd annual (virtual) “A Night at the Mouse Races” to guarantee your 2020 Landon’s League Foundation shirt size 👕 and a chance to win $25,000! 
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Registration link IN BIO!
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#LandonsLeague #CAMSAP1 #findacure #raredisease #specialneeds #fundraiser #nonprofit #nonprofitfundraiser #stlouisnonprofit #charity #neverlosehope #lissencephaly #smoothbrain #stlouischarity #stlouisfundraiser #cerebralpalsy #genetherapy #specialneedsfamily #specialneedsjourney #epilepsysucks
Flour eeeverywhere, including my hair. Don’t car Flour eeeverywhere, including my hair. Don’t care! 😁 Everyone loves Friday pizza night!
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Register now for our 3rd annual (virtual) fundraiser to guarantee your 2020 Landon’s League Foundation shirt size 👕 and a chance to win $25,000!
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Sign-up at the LINK IN BIO! 
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#LandonsLeague #CAMSAP1 #findacure #raredisease #specialneeds #fundraiser #nonprofit #nonprofitfundraiser #stlouisnonprofit #charity #neverlosehope #lissencephaly #smoothbrain #stlouischarity #stlouisfundraiser #cerebralpalsy #genetherapy #specialneedsfamily #specialneedsjourney
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