Amazing… #ParentsAsRare footage foreshadowed everyone coming back to see if #Twittershutdown :
We all need a little bit of sunshine, including on #Mito AwarenessWeek day 3.
Today, Emma & I discuss the need for facts & work towards cures, with support being provided along the way.
It’s true for #Mito & for #RareDisease in general.
#Bake4Mito #ParentsAsRare #WorldMitoWeek
The new MitoAction podcast series, Parents As Rare, hosted by Adam Johnson - DadVocate is available! Don't miss Adam's chat with his children about how rare disease has impacted them. mitoaction.org/resources/hear…
#mitochondrialdisease #raredisease #parentsasrare #raredisease podcast
I'm on the #ParentsAsRare podcast! Adam Johnson - DadVocate and I talk about my research and recommendations for promoting good mental health practices in families with #RareDiseases Thanks for having me!
Next time, would you please make a bold statement rather than showing up in such meek & mousey outfit, Adam Johnson - DadVocate? 😂 Bravo for shining a bright spotlight on #CRPSAwarenessMonth through your #ParentsAsRare podcast, your ultra orange outfit…and your vibrant personality!
I had the privilege of being interviewed by Adam Johnson - DadVocate for the #ParentsAsRare podcast a couple weeks ago. Thanks again Adam! Swing by and have a listen. #RareDisease #ChronicParenting
#ParentsAsRare is back! Robin EM-powers patients challenges the status quo, & I love it!
I also shoutout DISORDER: The Rare Disease Film Festival for featuring David Ross #BeyondLimits film.
Their #PainPoints series launches today. It’s Festivus…let the airing of grievances begin! 🎧🔊
rarediseasedad.com/parents-as-rar…
Cancer Canuck (Jason Manuge) 🇨🇦🦀💙 Jason, I’m thankful we connected. I appreciate your candor & vulnerability.
Though our conditions & circumstances are different, palliative care has been something I’ve grappled with as well.
In case it’s helpful, my #ParentsAsRare pod (ep 74) dives in:
rarediseasedad.com/parents-as-rar…
Adam Johnson - DadVocate Stiff Person Syndrome Research Foundation Cure VCP Disease Simply Kristy Nathan Peck MitoAction Ross Lisa Weinberger, MAT Jenni Young, PhD (she/her) Global Genes Your podcast #ParentsasRare is amazing. You are doing great work. Congratulations on your one year anniversary.
Adam Johnson - DadVocate MitoAction I really enjoyed and was proud to take part in this #RareDisease #cowdensyndrome #Parentsasrare #mentalhealth
Adam Johnson - DadVocate Stiff Person Syndrome Research Foundation Cure VCP Disease Simply Kristy Nathan Peck MitoAction Ross Lisa Weinberger, MAT Jenni Young, PhD (she/her) Global Genes Chris✞chronicpainDAD Such a milestone, Adam! #ParentsAsRare is a vital gift of information & inspiration to the #RareDisease community, and beyond. I can’t wait to see you post about your two year anniversary! 💚
Adam Johnson - DadVocate Lisa Weinberger, MAT Adam, I have absolutely no doubt the #ParentsAsRare podcast is helping many, many people!
Adam Johnson - DadVocate Becky Sansbury Effie Parks Thanks Becky. It was an honour to have been invited to do a as #Parentsasrare podcast with Adam . He is a natural as podcaster making the conversation very natural which made it easy for me to talk about how living with a #raredisease has impacted me and my family
I’ll post there on occasion & keep #ParentsAsRare moving along.
Joint efforts with my daughter (Another Helping) to raise awareness for the #MitochondrialDisease community will continue, too.
Advocacy can be challenging & emotional, helpful & rewarding. I’m glad we took the leap. 💚