I have A.L.S. (Lou Gehrig’s Disease)

I have recently been diagnosed with A.L.S., Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s Disease. This is the same disease that affected the great scientist Stephen Hawking, who lived many long and productive years with it, as I plan to. 

Fortunately, unlike Mr. Hawking, it only affects my tongue and throat. My clarity of speech varies depending on the time of day. Bottom line – I can speak, but I will have to ask you to listen closely.

Despite the challenges I face with speech, it is business as usual for me, Global Toy Experts, and Global Toy News. I am the same person you have always known: only smarter and more empathetic.

If you recall, Stephen Hawking used a keyboard and a computer to speak. The device would turn his written words into spoken ones. I have made several trips to Boston and have been working with the people who made his device. Thanks to technological advances, the words that come out sound just like me – pretty cool. When I need this, if I do, I will have it ready.

This diagnosis comes at the end of a year of trying to discover what makes it so hard for me to speak clearly. At first, we thought it was the result of a tooth extraction. Then we plain didn’t know. That’s where A.L.S. comes in. The only way to diagnose it is to rule out everything else.

I am currently taking two drugs that are supposed to slow down the disease’s progress. One was just approved two months ago.

My mantra has always been there is not a lot I can control in life, but I can manage a lot, and that’s what I will do. I’ll see you out there on the Toy Highway. Next stop – Nuremberg for the Spielwarenmesse.

19 thoughts

  1. So the battle is on and you are fit, in so many ways, to take this sucker on. You have an enormous community of people who love you and are ready to fight the fight. Thank you for sharing. Being open is the way we all can let in the light. Susan

  2. Hello my friend. Hearing that you are taking on ALS headfirst and telling it to kiss your @ss is no surprise. You’re a fighter and that doesn’t change. We’ll see you this year on the next stops of the “toy carnival”!

  3. First of all and despite the news, Happy New Year! I’m sure you will manage to over come and learn a lot from it, and your attitude probes that! Wish you all the best and really looking forward to give you a big hug in Nuremberg. Keep doing wat you do, and no matter what don’t forget to keep smiling.

  4. Richard, you’re standing like a warrior in that picture. There’s no doubt you’ll face this thing down with strength and dignity. Sending strong positive vibes and warm hugs your way.

  5. Sorry to hear about your diagnosis but as one who knows you would expect you are handling it with strength and grace. I look forward to seeing you at Nuremberg Toy Fair!

  6. Hi Richard. Sorry to hear the news… my prayers and best wishes.
    Over twenty years ago we first met at Toy Fair when I scheduled a quick coffee meet-up with you. I was a newbie to the industry and you were an expert and I traded you coffee for some advice. It was very good advice!
    In the twenty years since you’ve perfected the giving of good advice with your Global Toy endeavors. I hope there will be plenty more years, I’m rooting for you.

  7. Richard…….all the best. I am sure the toy community is with you and looking for you to continue your insights. Stay strong and enjoy the fabulous Nuremberg show

  8. I admire your courage to face this diagnosis with such openness and bravery. Best of luck on the road ahead. Sending ALS-slowing thoughts your way!

  9. It was good to give you a hug in Dallas and expect another much bigger one in Nuremberg! The entire Toy Association crew is pulling for you and ready to help and support you however needed.
    You’ve always been there for the industry and one of its loudest champions now it’s time for us all to rally around you. Love and godspeed on this journey.

  10. I’m proud of your bravery, honesty and positive attitude about this Richard. I’m very sorry to learn of this diagnosis and sure it is a difficult thing to deal with. You are one of the best humans I know and I’m happy you have a close circle of family and friends to help you through this. We all love you!

  11. Richard – Thank you for sharing your story! It serves as inspiration and education for anyone having to manage an ALS diagnosis. Your positive perspective, strength and enthusiasm shine through, regardless of the circumstances. Without a doubt, your voice in the toy industry will only grow with more resonance and reverence. Wishing you and your family the very best and if you ever need anything, don’t hesitate to reach out. I’ll be cheering you on!

  12. This must be very hard for somebody that eloquent and well-spoken (and on top of that so much interesting stuff to say). But we all know if anybody can do it it is you. The hobbyDB team and I are proud to be associated with you (for others that do not know Richard is on our Advisory Council).

  13. My Good Friend Richard,
    As I have followed you along this journey the past year I have witnessed and admired your strength and determination in dealing with the diagnosis. I have no doubt you will continue on as always.

  14. Thanks for all you do for the toy industry. Your voice may be challenged, but your words are priceless! Wishing you strength and courage during this trying time. Thank you for sharing such difficult news. We’re behind you!

  15. Hi Richard,
    This is why you are an icon in the toy business. You are strong, smart, empathetic and face challenges head on. I always learn so much from reading your articles. Now I’ve learn something especially valuable. Strength amidst adversity, living your challenges out loud, being brave and never being anything other than you. Thank you for being such an inspiration.

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