Steve Schleuder

I am Co-Chair of the Adult Leadership Advisory Board (ALAB), a nonprofit organization comprised of adults living with cystinosis.

[Steve Schleuder @LLunacy]

Are you struggling with anxieties and stress due to having a chronic illness during the Pandemic? Check out our new episode on Cystinosis Rare: Journey into the Unknown episode 6: https://t.co/ZeTpxBCXUK #Chronic #RareDisease #mentalhealth #COVID19 #CRN #NORD

[Steve Schleuder @LLunacy]

https://t.co/VTTQ5GVQLB #Cystinosis #Pandemic #chronicillness #ChronicPain #MentalHealthMatters

[Steve Schleuder @LLunacy]

I just started my first Fiverr gig! Check it out here: https://t.co/G7CKOS4XMc #fiverrseller #LogoDesign #GraphicDesign #Entrepreneurship #NewBeginnings

[Steve Schleuder @LLunacy]

Episode 3a: Youth to Adult Transition. Cystinosis Rare: Journey Into the... https://t.co/Kb5b12fa6q via @YouTube

[Cystinosis CRN @CystinosisCRN]

2nd patient dosed in gene therapy clinical trial for #cystinosis https://t.co/ELRrvsZDai #clinicaltrial #genetherapy #research

[Cystinosis CRN @CystinosisCRN]

Join the conversation - adults living with cystinosis will host; Saturday @ 12pm ET to discuss overcoming limits & setting goals. More info here https://t.co/j3B7Extwym @Cystinosis79 @LLunacy

[Barack Obama @BarackObama]

My statement on the death of George Floyd:

[Barack Obama @BarackObama]

On Memorial Day, we honor those who gave all for us. That takes different forms this year, but it’s even more vital with the loss of so many veterans to COVID-19.

The way they lived, in service to one another, should be our roadmap in the months ahead. https://t.co/S0sqvuicm8

[Steve Schleuder @LLunacy]

A goal is not always meant to be reached, it often serves simply as something to aim at.
-Bruce Lee #MotivationalQuotes

[Dalai Lama @DalaiLama]

Irrespective of whether we have faith in religion or not, it’s good to be more compassionate. It makes us happier as individuals with a positive influence on our families and the neighborhood where we live.

[Steve Schleuder @LLunacy]

New thing my dad discovered during a quarantine: Mixing chocolate mint tea with creamer and kahlúa makes one heck of a nice adult beverage.

[Steve Schleuder @LLunacy]

I conversated with my folks yesterday about how what we’re feeling right now with COVID-19 is similar to what they felt when I was diagnosed with Cystinosis when I was 18 months old. It’s nice that during this traumatic time we’re finding new ways to understand & connect.

[Steve Schleuder @LLunacy]

Novi, MI creek

[National Human Genome Research Institute @genome_gov]

We at @genome_gov are proud to announce that Dr. Bill Gahl has received the prestigious @HHSGov Career Achievement Award, for his relentless work to diagnose and treat individuals with rare and undiagnosed diseases. Read more about Bill's story here: https://t.co/WvTlxHFLDi

[Global Genes @GlobalGenes]

New partnership between @MDSFoundation and Notable Labs helps to advance therapy developments for rare blood disease. #CareAboutRare
https://t.co/lpRV2b9toi

[Cystinosis Ireland @CystinosisIrl]

Second online conference in three weeks... Very glad I'm just watching & learning this time! Excellent work by @eurordis to bring the #ecrd2020 to so many so well. @CystinosisIrl

[Cystinosis Research @NataliesWish]

Avrobio is presenting Dr. Cherqui’s preliminary results from Phase 1/2 of the stem cell & gene therapy trial. We are so thankful to our community who has enabled us to contribute $5.5M toward her life-changing research, and so honored to be a part of her progress toward a cure!

[Steve Schleuder @LLunacy]

#googlearts&culture

[Steve Schleuder @LLunacy]

Are you having cabin fever? Try and distract yourself with some Art! https://t.co/sHECsTVu9g #art #creativity #therapy

[Steve Schleuder @LLunacy]

“You always gain by giving love.”-Reese Witherspoon