Joining a great group of MS Society advocates today at the State Capitol. Working together with other patient groups we can expand our impact and elevate the patient voice.
#bleedingdisorders #multiplesclerosis #patientvoice #AllCopaysCount #sb1199
Kicking off with 125 patient advocates from across the country. What can we accomplish together?
#bleedingdisorders #advocacy #patientvoice #IEEPO2026 #poweringbreakthroughstogether
First full day of the 2026 Western States Regional Hemophilia Network annual meeting. Our collaboration with the providers at our hemophilia treatment centers is a critical partnership in ensuring all patients have access to quality, equitable and affordable health care.
#bleedingdisorders
Last weekend was the CCBDF Unite Walk. It was a beautiful day to raise awareness about bleeding disorders and raise money to support the great programs provided by CCBDF.
Thanks to all who supported Kinst-Carey for a Cure!
#uniteforbleedingdisorders #peer2peer #thankyou
Just back from science camp and she will be swimming a 500 tomorrow!
Just 2 days left to collect donations for her swim-a-thon.
Every bit helps. Donations are due on Sunday. You can donate online or Venmo me and I’ll submit it. DM or text me for info…
#usaswimmingswimathon
It’s been hectic at our house and our fundraising efforts have stalled out a bit. She has raised $465 of her BIG $1500 goal! Her sights are set high because she is so grateful to have found her “thing” and an awesome team to do it with!
Every little bit would help!
#usaswimmingswimathon #swimteam
Genentech Advocacy and Access Summit. Collaborating with partners to talk about health care access. Always great to spend time with colleagues who are also friends.
#bleedingdisorders #advocacy #AccessToCare
“We felt betrayal. We learned resilience. We promise this will never happen again.”
#aidsmemorialgrove #bleedingdisorders #neveragain
The CCA Swim-a-thon is on 10/11. Ashley would love you support - she is trying to raise $1500.
Donate online (select Ashley Kinst) or mail a check made out to CCA or Venmo me. DM for more information. All donations must be turned in by October 5.
www.ccaswimming.org/page/tu-money
It’s time for the CCBDF Unite Walk. We would love your support as we honor my dad.
uniteforbleedingdisorders.org/teams/15861
Don’t look away.
I just can’t - the news gets worse and worse
I never want to hear another word about the GOP being the alleged pro life party....
Big turnout in Roseville, CA - largest protest I’ve ever seen here.
Every day is a great day to advocate for #bleedingdisorders and #raredisease patients. It’s especially fun when you see a lot of friends. So many, that your group thinks you’re a celebrity but it’s just that the Capitol is like high school or a small college campus. 😂
#advocacyinaction #caleg
Time with my friends, colleagues and fellow EDs is always the very best. Fills my cup. Encourages my soul. Inspires my work. These people are some of the very best!!
#workfam❤️ #chapterstafforganization #inspired
🛑 For today's call to action: The Trump admin is expanding Schedule F.
This could strip civil service protections from thousands of federal workers, including scientists—replacing them with Trump loyalists.
🗓️ Public comment's still open—have at it!
🔗 www.regulations.gov/document/OPM...
On World Hemophilia Day, I remember my dad - my inspiration and legacy for the advocacy I do for the #bleedingdisorder and #raredisease communities.
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy
Looking forward to another beautiful day in Paradise. Conference kicked off last night. The family can enjoy another day at the pool. 😍
#KinstFamilyFieldTrips #bleedingdisorders #advocacy #education
Yesterday, as others shared at the Celebration of Life I was taken right back to the moment I was told my dad had passed. It has been over 30 years but I still miss him & am so thankful I can do this work for the #bleedingdisorders community to help keep his memory alive.
#neverforget #missyoudaddy
Good morning from San Diego! Excited to see more friends, make more connections and learn more for our community today!
#bleedingdisorders #advocacy #education
Exhibit hall will be opening soon. Come say hello to the California team at booth #515.
#BleedingDisorders #advocacy #education
Kicking off the official Day 1 of Hemophilia Federation of America Annual Symposium at the Advocacy Precon after a great afternoon and evening yesterday with fellow member organizations from across the country.
#bleedingdisorders #advocacy #patientvoice
Off to San Diego for the Hemophilia Federation of America Annual Symposium. Hope to see lots of my colleagues and blood brothers and sisters there!
#worktravel #bloodfamily #sohappyitsinCA
While we’ve been doing a lot of sightseeing this week, our real purpose for coming was to join with our bleeding disorders community in Washington DC at this critical time to advocate for #bleedingdisorders and #raredisease.
#KinstFamilyFieldTrips #nbdf #washingtondays2025 #advocacy
Off on our next adventure!
#kinstfamilyfieldtrips #washingtondc #history #advocacy #coolflightattendant
Let’s celebrate all who are rare today! 💕💕
#RareDiseaseDay2025 #ShowYourStripes #bleedingdisorders
