Rare Disease

Happy Friday! 🌻

Let’s take a #MightyMinute to reflect on our daily habits today, Mighties. 💡

The relationships we have—with ourselves, our environment, and those around us—are important. Being aware of our regular behaviors and routines not only helps us understand ourselves better, but also reveals what’s working, what we’d like to change, and which new habits we’re open to trying.

So, what habit are you currently working on—or hoping to build—this year?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Having a dedicated place you can go to reflect and sort through your thoughts can be super helpful, especially in those moments when you’re learning something new (exciting!) or gaining a different perspective or insight (scary!).

Where do you go when you need time to yourself to pause, regroup, and think?

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

When our sons were diagnosed with Duchenne muscular dystrophy, we felt like our world had collapsed. First our oldest, then—just when we thought lightning couldn’t strike twice—our youngest was diagnosed too.

We were scared. We were grieving. And we didn’t know where to start.

But one thing became clear quickly: if we wanted a better future for our boys—and other families like ours—we couldn’t stay quiet.

This year, my husband and I flew to Washington, D.C. to speak directly with lawmakers. We asked for continued funding for research. We pushed for policies that protect families with medically complex children. We carried not just our sons’ stories, but the weight of every family walking this road with us.

We documented the experience in a short video—not to promote ourselves, but to show what rare disease advocacy really looks like when it comes from the heart. We hope it helps others feel less alone, and maybe even inspired to share their own story too.

youtu.be/P2BRFHa4ngw

We’ve also started sharing more about our journey on YouTube, in hopes of reaching other families navigating this life. If this resonates with you, we’d love to have you join us.

Because none of us should have to do this alone.

Anger is valid, but holding onto it is heavy. It doesn't punish the person who hurt you; it punishes you. Ask yourself: What am I carrying that no longer serves me? A powerful way to begin releasing it is to name the emotion without judgment, breathe through it, and remind yourself that peace is a choice, not a reward someone gives you. Write down what you're ready to let go of, then rip up the paper. Letting go doesn't mean forgetting; it means choosing your well-being over the weight of holding on.

What are you ready to release today?

~ Thanks to all. Thanks for all. ~

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis

Mighties, imagine waking up each day to a message that instantly brightens your mood, motivates you, or makes you smile. What would that message say, who would it be from, and why would it be meaningful to you?

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Let’s practice reframing a thought today, Mighty friends!

When you reframe or shift a thought, you’re simply changing your perspective in order to understand something in a new and different way.

Let's try it using these steps with an anxious thought:

1️⃣ Write down one thing your anxiety tells you.

2️⃣ Now, write down the opposite.

Mighty staffer @sparklywartanks reframed this thought:

1️⃣ I'm not doing a good enough job.

2️⃣ I'm doing my best and that's more than enough.

Reframe your own thought in the comments below! ⬇️

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Hi, Mighties! 🌟

How’s everyone’s week going? What does self-care look like for you today? How are you supporting your body?

Check in with us in the comments below!👇 💌

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie