Help Kade send ALS to the Pits!

On December 10, 2018, our family was forced into a battle that was unexpected, unforeseen and life-altering.  Our 21-year old son, Kade, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease; named after the New York Yankees baseball player who was forced to retire once diagnosed.  Ironically, baseball has been a huge part of our family’s history.  Both Kade and his younger brother, Kruz, have played baseball pretty much from the time they could walk.  Kade spent the first 4 years of his life, traveling and playing in locker rooms and dugouts, as well as running around the bases at a variety of minor league ballparks.   He loves the game.  Kandy and Mitchel grew up in Midwest City, Oklahoma; home of the proud Bombers.  Both are graduates of Midwest City and later Oklahoma State University.  After graduating from OSU, Kandy became a flight attendant for American Airlines, and just started her 29th year of flying.  Mitchel had a very successful baseball career at OSU, receiving many honors, including the induction into the Oklahoma State Baseball Hall of Fame.  Mitchel continued to play 11 years of professional baseball for various organizations including the Expos, Twins, Orioles, White Sox and finally, the Rangers.   His last 7 years were at the AAA  level and he was selected for the AAA All-Star team in 1995.  Both Kade and Kruz have a love of sports and were 3 sport athletes most of their lives.  Football, wrestling and baseball year-round. Not much down time around the Simons household.  Both Kade and his brother, Kruz, were student athletes, graduating from Edmond North High School.  This persistent desire to compete, and the will and determination to keep fighting, has prepared us for this biggest life battle of all.

After being off a year with a sports related injury, Kade was playing baseball at Panola State College in the spring of 2018, when he started to feel some weakness.  He felt a step slower (and we all know that Kade can fly) and his bat didn’t move through the zone quite like he was used to.   He still had a successful season but came home to OK in May of 2018 with some questions about his health.  We attributed many of his symptoms to the traumatic injury that Kade had sustained to his throwing arm the year before.  We started with a PRP injection to help with the healing and muscle weakness to his arm.  There were other doctor's visits which ultimately led us to the neurologist’s office in December of 2018.  There, we were told that Kade, at the age of 21, was likely to have an incurable disease that is more commonly diagnosed to people much older than him.   A second opinion with another neurologist and a whirlwind of doctor’s visits and invasive procedures soon followed.  In February 2019, we flew to the Mayo Clinic in Rochester, MN to spend a week there for further testing.  No one could give an alternative to this diagnosis. Not knowing much about this disease at all, we began researching  to learn as much as we could.  What we learned is that there is no cure for ALS; that approximately 5,000 Americans are diagnosed each year with this disease; the estimated out-of-pocket cost for ALS care is $250,000 and the average life expectancy for someone diagnosed with ALS is 2-5 years.  What we learned personally, is that the traditional medical community offers very little hope.  However, there is a wonderful community of pALS (people with ALS) and cALS (caregivers of ALS) who have tried unconventional treatments and have had success.   At that time, we were made aware of Brainstorm’s NurOwn phase 3 clinical trial being conducted at 6 U.S. hospitals.  They were looking for 200 participants and Kade was fortunate enough to be accepted.  Since there are currently only 2 FDA approved drugs for ALS and neither one is honestly much of an option given the side effects some experience, and the fact that they only have a “chance” to prolong life for just a short time, we were emotional and excited about this new opportunity.  Sadly, NurOwn is a double-blind study and half of the patients receive the stem cell treatment and half receive a placebo.  In total, the trial is 14 visits to the locations performing the trial and include multiple lumbar punctures along with ECG’s, bloodwork and breathing tests.  The three “treatment” visits require a 24 hour stay in the hospital.  Kade completed his 3rd and final treatment visit in November of 2019.  So, for the last year, we have flown to Rochester, MN, one to two times a month, praying that NurOwn will be approved not as a cure by the FDA, but as an effective treatment for ALS. 

Phase 1 and 2 showed the safety and efficacy of the treatment, while Phase 3 was opened to more participants to see how it performs on a broader basis.  Many participants are seeing amazing results.  Progression has slowed down; drastically, for some and some are recovering more completely with signs of reversal.  A gentleman who had difficulty walking, started running again.  Another gentleman who has been wheelchair bound, stood up for the first time in two years.  While we have no confirmation as to whether Kade received the placebo or treatment (we should find out around October of 2020), Kade felt immediate improvements after his spinal cord injections ranging from drastically reduced fasciculations to more strength and balance.  It is our belief that Kade was one of the lucky ones to receive the stem cell treatment.  However, now,  it is no longer available to him because of the FDA approval process.  What the average person believes about the "Right to Try" law doesn't apply to ALS patients.    Kade is able to tell when his body is not receiving NurOwn. 

Because time is of the essence when it comes to ALS, we attended the Healing ALS conference in October 2019 in Salt Lake City, UT.  There, people, who have been battling this disease came together to share ways in which they combat their symptoms, giving hope to many.  As of today, neurologist Dr. Richard Bedlack of Duke University has documented 44 reversals. No one really knows how or why a person gets this disease. Each person is affected differently with varying stages of progression.  Only 10% of the cases are familial, or genetic; the other 90% are sporadic, meaning no known reason.  It’s a combination of environmental factors and oxidative stress to the body.  Many athletes get diagnosed with this disease especially if they’ve had a concussion or brain injury.  1 out of 6 patients diagnosed with ALS are military service members, most likely due to the stress of their work environment.  It basically becomes a perfect storm with no one knowing what exactly triggers this. 

Every treatment is considered experimental and is not covered by insurance. Due to the restrictions of the clinical trial, we’ve waited until now to go public and to ask for assistance.  Every expense, every treatment we pursue, is out of pocket.  After much research, our next treatment for Kade has taken us to Miami, FL where reversal #44 received treatment and where we’ve met many other amazing ALS warriors from around the U.S. and other countries. We’re also determined to find a way for Kade to receive NurOwn or other stem cell treatments should the FDA continue to drag out the approval process. We’re respectfully asking for any donation that you can offer to help fight this battle.  Please help our family fight along with, and for Kade.

 Kade often says, “God gives his toughest battles to his strongest warriors”.  For all of you that know Kade, you know that he’s a mighty warrior and that he doesn't back down from a challenge.

We’d respectfully like to ask for you to join our fight.  No amount is too small.  If a monetary donation is something that is not feasible, another way to help is by donating hotel reward points for those who accumulate them traveling for work.  These points can be used to provide lodging when we travel for treatments.  Another way to help is to reach out to your elected officials, demanding that ALS patients have the “Right to Try” any known safe and effective treatment that is denied to them through the lengthy and slow-moving FDA approval process.  Is it right that states have passed laws allowing people assisted deaths, while denying a person, given a terminal diagnosis, access to treatments that could extend or save their life when they have the desire to live?  People with ALS don’t have 10 years to wait.  With the average age of diagnosis being 54, Kade is one of the youngest people diagnosed and living with ALS.  Please join us in sharing our fight.  Finally, and most importantly, your prayers and positive, healing energy are always welcome.  If you have questions about alternative ways of helping please reach out to:  [email redacted]

#sendALStothePits
#teamSunshineKade