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Second Chance Living™

“What will you do with your second chance today?” is the question Mercedes poses to general audiences in this transformational program. Her gripping story moves participants to put their lives in perspective and carefully consider how the choices they make profoundly affect their future.
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Get It Right Today, Not Tomorrow

Do your employees and leaders too often operate in Survival Mode, putting out fires and putting off until tomorrow what should be done today? This program powerfully dispels the notion that there will always be a tomorrow in which we can finish today’s unfinished business and moves individuals to work and live with intentionality.
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Safety: Don’t Count on 2nd Chances

Can too much experience be a bad thing? Absolutely…if it leads to complacency. The highly experienced pilots of Flight 965 were lulled into a false sense of security that led to the deaths of 160 people. Mercedes’ one-of-a-kind safety presentation uses the factual account of the crash of Flight 965 as an anchor to drive home the dangers of complacency and the importance of situational awareness.
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When in DC a couple of months ago, I saw these men & women passionately pleading to lawmakers to listen. We should ALL listen with gratitude, recognize their adverse health problems plaguing them 4 doing their job for us.

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23 hours ago

Mercedes Ramirez Johnson

Expanding Newborn Screenings to include more diagnoses helps give babies born with degenerative diseases a fighting chance before the disease starts to take away their ability to grow and thrive. This is a cause that is near and dear to my heart — if you feel inclined, please fill out the simple form to let your lawmakers know it’s important to you too. Thank you! 👇🏽👇🏽👇🏽👇🏽🗣 Attention Advocates: tomorrow is a big day for Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R. 2507)!
Tomorrow is an educational opportunity for Members of Congress on the Energy and Commerce Committee to ask questions of the expert witnesses, including Dr. Bocchini who will testify on newborn screening. This important hearing, which will examine the Newborn Screening Saves Lives Reauthorization Act of 2019, is another step in the right direction for the rare disease community!

📲 We urge you to show your members of Congress that this piece of legislation is important to you and your family by asking them to co-sponsor through this quick online form: bit.ly/SupportHR2507

🦓 We are so happy to see the incredible progress being made on the Newborn Screening Saves Lives Reathorization Act thanks to the support of rare disease advocates. Keep up the good work by sharing this post, contacting your members of Congress, and continuing to advocate for rare disease!
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Expanding Newborn Screenings to include more diagnoses helps give babies born with degenerative diseases a fighting chance before the disease starts to take away their ability to grow and thrive. This is a cause that is near and dear to my heart — if you feel inclined, please fill out the simple form to let your lawmakers know it’s important to you too. Thank you! 👇🏽👇🏽👇🏽👇🏽

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Thanks so much for sharing! So glad to hear NBS is near and dear to your heart as well!

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... and I miss both of ours more than words can describe.

2 weeks ago

Mercedes Ramirez Johnson

Fathers Day is coming up this weekend and I want to give a special recognition to the fathers of children living with rare diseases. All great dads are a blessing to their children, their wives, their families and their entire community! But it takes a *very special man* to be the father of a special needs child battling through the fight of their life.“My son Noah was diagnosed in 2009 with CLN2 Batten disease after an 18-month diagnostic journey. My Daughter Laine was diagnosed a few months later. No treatment was available back in 2009, but that has changed and there is now an FDA-approved therapy which dramatically impacts patients. What has not changed is the rapid neurological decline experienced without treatment. #Newbornscreening has the ability to impact patients BEFORE the disease manifests. I want all CLN2 Batten children to be diagnosed at birth, so these children can access therapy before it is too late” – Tracy VanHoutan, Rare Dad

Anyone can be a father, but it takes a special person to be a rare dad. In honor of #FathersDay and all #raredads, please ask your Member of Congress to co-sponsor the #NewbornScreeningSavesLivesAct H.R. 2507 today. It only takes a minute. bit.ly/2LiYRoj

Share your rare dad story using #raredad.

Association of Public Health Laboratories (APHL) March of Dimes Expecting Health
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Fathers Day is coming up this weekend and I want to give a special recognition to the fathers of children living with rare diseases. All great dads are a blessing to their children, their wives, their families and their entire community! But it takes a *very special man* to be the father of a special needs child battling through the fight of their life.

Hey friends — I don’t know which of you need to see this today but it really resonated with me when I saw it. You only get ONE life — so live it and give it all you got! ... See MoreSee Less

Hey friends — I don’t know which of you need to see this today but it really resonated with me when I saw it. You only get ONE life — so live it and give it all you got!
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