Sarepta Keynote

Yesterday I was the closing keynote speaker for Sarepta Therapeutics's leadership summit in Miami. My address was shaped around their conference theme of Frontiers - only I talked about the tiny frontiers we face between today and our ultimate destination(s) and the need to pivot and adapt to circumstances out of our control. The story arc was based on Mitchell's Journey because they wanted to lift the curtain a little and gain more insights on the impact rare diseases have on families - but had a host of leadership principles throughout. It was a powerful meeting filled with insights on what it means to be human and how to lead, no matter the challenges in front of us.

Keynote @ PPMD Healthcare Summit


Tonight I spoke at PPMD's healthcare summit and shared a candid look at the impact social media has on families, medicine, and the pediatric population. I also explored some challenges related to cognitive bias, the Dunning Kruger Effect, and the need to be more circumspect with words -- especially at a time when humans are not only flooded with information but sometimes drowning misinformation.

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This afternoon I spent some time with educators, faculty, and staff in Guatemala who want to serve better one of their students who has DMD.

I was humbled and touched by their sincerity and how much they want to help. An old high school friend, Ginger Carlson, who runs their curriculum program asked that Mitchell's Journey share our son's story and experience through the education system. Specifically, they wanted to know what helped our boy and what educators can do to better serve a student whose muscles are wasting away.

Lately, much of Mitchell's Journey's work has been helping families and educating support groups across the world. 
Some we've posted on our website, other's we haven't. While our cultural nuances and languages may be different, one thing I've come to know is we're one big family. Every human is more similar that they're different.

Mitchell's Journey has been busy behind the scenes building tools to help families cope with life's greatest difficulties - regardless if they have a disease, a life-setback, or dealing with loss.

Soon those tools will be available to the public. We'll also start sharing new stories soon.

Thank You AGC of Utah

We’re grateful for AGC of Utah’s generous contribution to the Mitchell’s Journey Foundation. They’ve been a loyal supporter of our work for a few years now and we’re humbled each time they donate. These funds are used to continue our work to create awareness, offer tools of hope for families who struggle to cope with loss, and support DMD families who need help with wheel chair ramps, ADA home modifications, and more.



Tonight Natalie and I spent time with Paula, Padriac, Archie, George, and Isaac. These three boys have DMD, just like Mitch. This family was so gracious to have us over for dinner, and we enjoyed their company a great deal.

Watching the two younger boys wrestle around the floor and walk on their tippy toes reminded us of our sweet Mitch. Archie, the eldest brother, was smart and insightful. We loved talking to him.

The younger boys asked if Natalie could read a bedtime story, which she did. I think this was the highlight of the trip for my sweet wife. It reminded her of reading stories to sweet Mitch, and it warmed her heart. The boys sat attentively in their bed as Natalie read a children's book we wrote about Mitch called "The Thing About Giving." It's a story of Mitchell getting his puppy and what happens when we give: both the giver and the receiver are blessed.

We have one more day here, and honestly, we don't want to go quite yet. So many other families we want to love. So many stories we want to hear. So many heavy hearts we want to lift and hug.

Mitchell's Journey in Israel

113 ק"מ מתוכם 
1.9.שחיה בים 
90 ק"מ אופניים 
ו21.1. ריצה 
שיעור בנחישות והתמדה. גם שהכול הולך נפלא פתאום יש רגעים שלא. 
השחיה הייתה מתוקתקת ולפי התוכנית , הרכיבה הייתה מתוכננת שמרתי על קצב והגעתי לתוצאה הרצויה , עד כאן היה הכול נפלא . 
ואז הגיע הריצה והחום הגדול והופ הגוף מסרב לשתף פעולה יותר נכון הראש , 4 סיבובי ריצה שכל אחד מהם חמישה ק"מ בקיבוץ שדות ים, חלק בחול ים חלק באספלט רותח. 


בשני הסיבובים הראשונים הייתה מחשבה לפרוש החום היה מעיק הדופק בשמיים ואז עוברים להליכה , ושוב ריצה שהדופק יורד , את השעון העברתי למצב דופק בלבד והחלטתי שזה הדבר היחיד שמכתיב לי את הדרך . בכל תחנת מים עוצרים ושותים .
בדרך שאלות מי הילד בתמונה על הגב. זה ילד שחלה בדושן ובגיל 10 ליבו הפסיק לפעום. מאז בכל תחרות שאני רץ בה , הוא על הגב שלי. 
ברגעים הקשיים בריצה וברגעי המשבר ןהמחשבות על פרישה , אתה מבין שזו בעצם זכות ובחירה. אני זה שבחר לעבור בספורט הזה

ולמה.. בין היתר כי אני יכול .
שיש לך דושן ואתה תקוע בכיסא גלגלים או מכונת הנשמה אין לך הרבה אופציות לבחור, אבל לי יש. 
אני בטוח שעם כל הקושי היו מתחלפים איתי בשניה
אז כשהם מתמודדים גם אני מתמודד ומסיים , גם עם זה ידרוש הליכה של כל המרחק. הגם שאת שלושת הק"מ האחרונים רצתי כמו ריצה של סוסים לעורבה, ולא עצרתי לרגע. 
אחרי קייץ שהיה חם לרוץ ועוד תקלות בדרך ידעתי שהריצה הפעם תהה עקב אכילס שלי בתחרות אבל לא עד כדי כך. בסוף זה הסתיים. 
ואי אפשר בלי תודות .
תודה ל Naomi Wainsztok שהביאה אותי ממש קרוב והיום עודדה בדרך. 
תודה ל Yoram Levav שכיוון דאג תיקן ועידכן כדי להשלים את ההכנה שלי עם התקלה בדרך. 
תודה ל Jeannette Michaeli Van Opdorp שבאה לעודד לצלם ולתמוך 
ותודה למשפחתי ואשתי היקרה Tali Kushman Kaplan שמאפשרת לי את כל השעות האלה והשיגעונות הספורטיבים שלי. 
ובסוף לכל אותם ילדים נערים ובוגרים חולי דושן שבשעות הקשות נותנים לי כוח ומוטיבציה להמשיך ולהתאמן 

📷 Snir Ovadia
ג'נט מיכאלי


ESSAY Translated in Chinese: 創傷的真相

A Mitchell’s Journey reader was so touched by our latest essay, The Truth About Trauma, she asked for permission to translate and re-post that story in Chinese. Thank you Atterly Ho, for helping Mitchell’s Journey reach more people.


當殯儀館的員工把我兒子推到前門時,我幾乎崩潰了。這是我兒子在萬聖節時,興高采烈地向孩子們送糖果的門。他是那種最會給人甜蜜的人 - 送糖果給其他孩子,比為自己要糖果更快樂。這是Mitchell最好的朋友要求玩耍會敲的門。這是我們臨終關懷護士告訴我們Mitch快要死去的大門......在同一時刻,天堂派了一個天使來承託我們破碎的心靈。





我無法變出一些詞語來形容我此刻所經歷的創傷 - 以及隨後,隨後一百萬次,由悲傷而來的創傷。 那天早上,因為哭得太厲害,我嘔吐不止。然後,我哭得更厲害,我以為一根肋骨斷了。雖然太陽升起來了,但漫長的悲傷之夜才剛剛開始。在接下來的幾年裡,我開始學習一些關於悲傷的痛苦真相,也學了一些關於創傷的真相。

悲傷和恐懼在許多方面都是相同的。 C.S.Lewis說得最好,“從沒有人告訴我,悲傷就如恐懼一樣。”回顧我悲傷的早期歲月,我生活在一種深刻的情緒受創狀態,感覺像是恐懼。當夜幕低垂,每一天,我都感到恐怖。



對受傷者來說,最好的建議可能是:不要指望別人理解你的悲傷,或者期望別人徘徊在側,直至你的悲傷完結。他們不能 - 終究,悲傷的旅程只是一個人的旅途。

對旁觀者來說,不要指望那個受傷的人,以你的閒暇節奏繼續向前。請記住,他們承受著悲傷的重壓 - 一種你無法想像的重量,即便在你的噩夢中。如果你要撫慰他們,你可以用體恤的話,去提起他們疲憊的心。我發現說:“我很抱歉你受傷了。我關心你!“已經足夠。

我經常這樣說:死亡是容易的部分,之後才是最難的。所以,當你看到一個失去某人的人時 – 要知道他們在葬禮上,和未來幾個月內都會輕輕地需要你的愛,關心和同理心 - 但在接下來的孤獨歲月裡,更會深深的需要。

當談到悲傷的創傷時,時間不會治癒。相反,如果我們小心照顧好傷口,時間會為我們創造治癒的空間。我想創傷就像坐驚嚇的過山車之後,所感覺到的腎上腺素,離開你的身體需要時間。前15分鐘,創傷好像滲透血管 - 但隨著時間過去,我們回到了常規的平靜狀態。我們有時會誤以為,被愛的人死亡像過山車,其實不然,這只是一個開始。創傷的過山車來自於自我懷疑,遺憾,無盡的假設,以及再次見到所愛的人那份渴望。這種創傷,需要很多年才能褪去。

創傷不只是打破了你的一部分,它粉碎了你很多部分,有時甚至整個你。然而,在某種程度上,我們收拾了破碎的碎片,並慢慢地重新拼湊起來。根據不同的失去性質,可能需要許多年。在創傷的另一面,我們永遠不再是同一個人 - 相反,我們成為了以前自己的馬賽克。當我們進入新設定時,有時會參差不齊,脆弱不平。但總是,會散放一種新的美麗。

關於創傷的真相是,直到我們親歷其境,它不僅比我們想像的更難,它比我們能夠想像的更難。然而,關於創傷的另一個充滿希望的真理,是它隨著時間的推移會減少 - 多小快慢受其他因素決定,其中大部分都在我們的控制之下。


#childloss #Grieving #失去孩子 #孩子死亡 #孩子去世 #悲傷父母 #子女死亡

Mitchell's Journey on the Love Your Story Podcast

Just wrapped up a podcast interview for the Love Your Story series. Though I look blank in the image, it was a lovely discussion on Mitchell’s Journey, coping with hardship and finding meaning in life. This episode looks to air sometime in December. We’ll lever everyone know when it is online.

Article Translated In Spanish

A non-profit in Texas, The Akari Foundation, translated a recent article written about Mitchell's Journey.  Thank you for making this available to the spanish speaking community!

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Article on Mitchell's Journey

Here's an article written about the work we've been doing at Mitchell's Journey.

Five years after the death of a Utah boy named Mitchell Jones, the national foundation created in his name helps families struggling with the ravages of Duchenne muscular dystrophy.

Mitchell, who was diagnosed with Duchenne at the age of 3, died of heart failure on March 2, 2013, just short of his 11th birthday. One year later, the boy’s father, Christopher Jones, established Mitchell’s Journey — a 501(c)(3) nonprofit organization that “provides tools and insights on grief, healing, and learning to live a life of significance.”

Christopher Jones, founder of the nonprofit Duchenne group “Mitchell’s Journey.” (Photo by Larry Luxner)

Jones, 44, is a self-described “serial entrepreneur” from Salt Lake City whose creative ad agency helps other nonprofits. His wife, Natalie, is a stay-at-home mom.

A board member of Parent Project Muscular Dystrophy (PPMD), Jones recently spoke to Muscular Dystrophy News Today following his keynote presentation at PPMD’s 2018 Annual Conference in Scottsdale, Arizona.

“I definitely want to create awareness,” he said. “There’s a million diseases out there, so nobody cares. But if you talk about a human story, they learn about Duchenne. My strategy is to give them something they can walk away with that’s going to help them.”


2018 PPMD Keynote

About to give a keynote at the #PPMD conference on the pursuit of happiness: surprising discoveries about finding joy in the journey.

Though I am speaking to the DMD community, this is a message for every person on planet earth. #mitchellsjourney

It's being live-streamed at 10 AM Mountain Time (~25 minutes from now)…/annual-confe…/live-stream/

Livestream with Youth Camp


Greg Tanner, the founder and director of Base Camp, a summer program for youth that teaches leadership and provides humanitarian service, introduced his audience to Mitchell's Journey as a foundation to support this summer.  Their goal is to directly serve families affected by DMD.  We're excited to work shoulder-to-shoulder with them!