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Khrystal Davis
@Hunt4acure
Passionate voice in the rare disease community as a patient advocate and writer. Loving mother to Hunter, our terminally ill 4yo with SMA Type I.
St. Louis, MO
Joined June 2010
3.5K
Following
2.8K
Followers
862
Posts
ย Pinned Tweet
Khrystal Davis
@Hunt4acure
over 10 years ago
@Hunt4acure
: Happy New Year Rare Friends ๐ I know 2016 will be an amazingly rare year.
#raredisease
@thefastmovement
@rarepov
@noahontherun
Hunt4acure
ย retweeted
Forestlands
@Forestlands
over 10 years ago
@Hunt4acure
@YouTube
When it's the only hope it's important to try!
Khrystal Davis
@Hunt4acure
over 10 years ago
Should the Terminally Ill Have the Right to Try Risky, Non FDA Approved ... https://t.co/hoAzvauduT via
@YouTube
Khrystal Davis
@Hunt4acure
over 10 years ago
@JonU235
Of course, how could I forget Jon! I remember now ๐ I ran errands in my galoshes, gloves, and coat. It was a good day.
Who to follow
Rare Diseases
@CheckOrphan
CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
Beyond the Diagnosis
@BeyondtheDx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
National Organization for Rare Disorders (NORD)
@RareDiseases
#NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Khrystal Davis
@Hunt4acure
over 10 years ago
@JayTheKurgan Thank you for the Retweet Jay. Do you listen to any talk radio or podcasts? @W_Angels_Wings
Khrystal Davis
@Hunt4acure
over 10 years ago
Thank you for the Retweet @JayTheKurgan
@RTDIceDam
&
@JonU235
Did you get Did you get snow today?
@Hunt4acure
Khrystal Davis
@Hunt4acure
over 10 years ago
Happy Saturday. I'm in St. Louis, and it's snowing. Where are you? Any chance of snow?
#snow
Khrystal Davis
@Hunt4acure
over 10 years ago
@Stanley_Team
Thank you for the Retweet Chrishena. I hope you're having an amazing weekend.
@TheFastMovement
@RarePOV
Khrystal Davis
@Hunt4acure
over 10 years ago
LISTEN & RETWEET: inspiring rare mom on radio: https://t.co/YXkbcvpXVD Stephanie Collins on Never Ever Give Up Hope @W_Angels_Wings
Khrystal Davis
@Hunt4acure
over 10 years ago
We never get enough blessings for Hunter โค https://t.co/Lj8u2mFDT5
Khrystal Davis
@Hunt4acure
over 10 years ago
Happy Birthday Yadria!
@_aridaaay
I hope you have an amazing day. Did you know butterflies are good luck? ... https://t.co/awh3b5Mc3I
Khrystal Davis
@Hunt4acure
over 10 years ago
Thank you for your kind words Bella. @bellomayok We are very blessed. Do you have a project you're working on now? https://t.co/Lj8u2mFDT5
Khrystal Davis
@Hunt4acure
over 10 years ago
Thank you for the Retweet Jay. @JayTheKurgan Do you have any big plans this weekend?
@_aridaaay
Khrystal Davis
@Hunt4acure
over 10 years ago
Thanks for following John!
@JohnNosta
Are you at
#CES
?
#raredisease
#technology
#innovation
Khrystal Davis
@Hunt4acure
over 10 years ago
@Hunt4acure
: What kind of scientist do you aspire to be?
@_aridaaay
#raredisease
#scientist
#compassion
Khrystal Davis
@Hunt4acure
over 10 years ago
Thank you for the tweet Yadira. โค๏ธ
@_aridaaay
You're so kind. We are lucky that Hunter receives treatments.
Hunt4acure
ย retweeted
Eliot Brenner
@eliotmbrenner
over 10 years ago
Nonprofits struggle to pay minimum wage - via
@NonProfitTimes
@pndblog https://t.co/lIwc8jsO1I
Hunt4acure
ย retweeted
Eliot Brenner
@eliotmbrenner
over 10 years ago
Top 10 Most-Read
@childtrends
Research of 2015 https://t.co/qQr03corIz
#children
Hunt4acure
ย retweeted
Stephanie Fischer
@RarePOV
over 10 years ago
Positive step for better patient outcomes: CA Hospitals Required To Keep Caregivers In The Loop https://t.co/U69hOh9S6K via
@khnews
Hunt4acure
ย retweeted
Stephanie Fischer
@RarePOV
over 10 years ago
Patients leaving hospitals often donโt understand care plans https://t.co/nfAE08K2Zu via
@Reuters
#hcldr
Hunt4acure
ย retweeted
Stephanie Fischer
@RarePOV
over 10 years ago
@hesaonlineorg @venriquezrios
@mindingourelder
@chroniccurve
2016 is a RARE leap year so we have 366 days to raise awareness!
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