Myotonic Dystrophy Foundation转发了
There are over 10,000 different rare diseases that affect 300 million people worldwide. One in every ten people in the United States has a rare disease. Today is Rare Disease Day, and my feed has been flooded with zebras as people raise awareness and show support for families impacted by rare diseases. Show your stripes For me, this cause is deeply personal. My wife, Lisa Harvey Duren, has been featured in an article that sheds light on the challenges and advocacy efforts surrounding Myotonic Dystrophy—a disease that affects countless families yet remains widely misunderstood. Raising awareness is crucial, and so is taking action. We are in a critical time period. I am doing this also in honor of my mother-in-law who just lost her fight with Myotonic Dystrophy this week. Let’s continue to amplify the voices of those living with rare diseases. ???? #RareDiseaseDay #MyotonicDystrophy #Advocacy #RareButStrong #MDF #Myotonoic
My wife also has myotonic dystrophy and we last year we lost her sister to the disease. I've reached out to all my representatives and our best friend is reaching out to his representatives and contacts.
I'm sorry for your loss, Paul, and for your wife's. Wishing you both much success with your admirable efforts and good work.
In these troubled times it is more important than ever that our voices be heard about our desire to continue the fight against such diseases.
I am so sorry for yours and Lisa's loss of both your mother-in-law and your daughter. Thank you both for being advocates and your efforts bringing attention to these vital health programs.
Thank you for bringing awareness to this critical issue.
Sorry for your wife's and your loss this week, Paul. My thoughts are with your family. We will get the word out.
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1 周https://www.myotonic.org/myotonic-dystrophy-advocacy