Sheraton San Diego Hotel & Marina

Instagram photos and videos

What an inspirational human! I’m so excited to read this memoir after hearing @dfajgenbaum share his story this morning! Thank you for the introduction @globalgenes 💫🦓✨#2019GGSummit


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Sharing my "WHY", which is my son Travis and our ability to make a difference to future children who someday won't have to die because of the rare genetic birth defect Isolated Congenital Asplenia. Grateful to the @retrophinrare team for this neat campaign.


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So happy to send a @highflyingbear Miles the Bear home with our friend & Miracle Flights recipient Mom, Katie Stevens. She is the Executive Director of @teamtelomere It was so great connecting with her at the #2019ggsummit ✈️ #miracleflights #thecurefordistance #miracleflightsfamily #teamtelomere #advocate #greatmom #friend #hope #raredisease #cure #milesthebear #highflyingbear


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Loved being here @2019GGSummit, reconnecting IRL with friends like Mark Dant, Dan Hinmon, Alyssa Mendel and Amber Freed, making new friends like Celeste Diaz Ferraro, Dr Maneesh Butte, Ben Forred and Nathan & Allison Peck and learning how to be a more fierce advocate for rare diseases like Isolated Congenital Asplenia.


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The Miracle Flights team @globalgenes #2019ggsummit has enjoyed catching up with many advocates this week. We greatly enjoyed seeing this #pertheswarrior #miracleflights #thecurefordistance #hope #raredisease #cures #advocates #inspired


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Rare Bear 🐻 learned so much at #2019ggsummit and can’t wait to get home to James to tell him all about it! @rare_science


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My, what large seagulls you have.


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#Rareis #WorldNarcolepsyDay 🌎this Sunday Sept. 22nd! Our first ever WND! I have a passion for raising awareness for this rare complicated neurological condition that effects my everyday life. Do you know what #narcolepsy is? It’s quite intriguing! #2019GGSUMMIT #careaboutrare #raredisease #advocate #WeTackleRare #sleep #invisibleillness #storytelling #raiseyourvoice


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Shared a fun photobooth moment this morning with a prior co-worker at the @globalgenes RARE Patient Advocacy Summit! #2019GGSummit


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It is so crazy to me (Matty) that in San Diego California I found another Rare Mama Bear that only lives about 45 minutes from me! Looking forward to hear @sixstevies speak about fundraising.


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🎁 Happiest of Birthdays to our amazing crew member and friend, Jennifer. She has been loyal to us for many years now and consistently gives her all both on and off charter. Thank you for all you do and for being the best first mate to Captain Stephen (your hubby!)


#sandiego #familybusiness #crewlife #boatcharter #catamaran #charterboat #birthday


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My rare adopted daughter!! 💖💖@taylorkane23 @rememberthegirls @globalgenes #rareiseverywhere


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We’re having a great time at #2019ggsummit with @globalgenes. Kevan will be sharing his story later today!


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It’s a beautiful morning in San Diego @globalgenes Summit! So grateful for this beautiful moment when @elisabethfaithparker had us all touch hands at #sunriseyoga this morning! I got to hold @owningthestory’s hand and embrace the power of our special #raredisease community! What a beautiful and powerful shared experience - so glad I attended, I needed some soul love today! 🧘🏻‍♀️🦓☀️♥️
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I’m so thrilled that everyone is loving the @littlest_warrior tees - if you don’t already know, you can use code “Jack10” for a discount at #littlestwarrior! Can’t wait to connect with more amazing #rareadvocates today! #rarediseaseadvocate #rarewarrior #warriormama #advocatelikeamother #rarediseaseawareness #rareis #pyridoxinedependentepilepsy #epilepsyadvocate #careaboutrare #globalgenes #rarediseases #raremom #epilepsydoesnthavejack #2019ggsummit


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Day 2 of @globalgenes Rare Patient Advocacy Summit is off to an amazing start with a keynote speech by Dr. David Fajgenbaum, Founder of Castleman Disease Collaborative Network and author of Chasing My Cure.
#2019ggsummit #careaboutrare #collaboration


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Just enjoying the views!


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Unpacked from San Diego in time to repack this weekend for Orlando. Six planes in a two week span. Beebs takes extra ice in her water, flight attendants, tysm.


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I’m a total fangirl for Susannah Cahalan, author of Brain on Fire! I was super stoked to hear her keynote address at #2019GGSummit, such an inspirational woman! I totally got to meet her too!!! #raredisease #careaboutrare #raiseyourvoice


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Day 1 at the #2019GGSummit was amazing! Living with a #raredisease has brought so many unexpected things into my life. It hasn’t been easy but I am grateful and blessed to be here and to #advocate amongst such passionate friends! #careaboutrare #WeTackleRare #narcolepsy #undiagnosed #worldnarcolepsyday


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Loved having the opportunity to attend such a fantastic session today on developing partnerships among rare communities & individuals!


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The LeBlanc and Taylor families at the Global Genes Summit! Working on advocating and making new connections to support our foundation and Salla Disease research! We are so thankful for the opportunity connect with other foundations and pioneers in rare disease research and support! #2019ggsummit #SallaDisease @globalgenes


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Sunset accompanied by a delightful flight of white wines at the Harbor's Edge. @visitsandiego #wine @sheratonsd


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Don’t miss your chance to meet miles! Stop by Miracle Flights exhibitor booth #209 at #2019ggsummit to see when he is making his next appearance. #thecurefordistance #miracleflights #globalgenes #rareis #bear #hope #careaboutrare


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It’s a social media takeover! From the 2019 @globalgenes Rare Patient Advocacy Summit in San Diego, CA by Miracle Flights team members, Terra, Dona & Melanie! #thecurefordistance #2019GGSUMMIT #miracleflights #horizontherapeutics #rareis #advocate #highflyingbear


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Thank you @globalgenes for the opportunity to share my summit experience! #syngap1 #summit #sandiego


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Day one of @globalgenes #2019ggSummit! Such a great opportunity for some of our family advocates to connect and learn together! - #rasopathies #careaboutrare #raredisease


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What an amazing start to kick off Day 1 @globalgenes and to listen to Dr. Steven Gray! I’m so excited for the next two days to learn, meet and connect with the best! #2019ggsummit #ChaseSinghDreams #SLC6A1 #RareDiseaseAwareness#advocatelikeamother


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1️⃣0️⃣0️⃣0️⃣+ attendees from 1️⃣9️⃣ countries & we all have something in common. Rare disease has affected us in one way or another @globalgenes


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Stop by booth #211 at the @globalgenes summit to learn more about our mission! Sign up to be on our mailing list, grab a business card or snag one of these fabulous canvas bags while supplies last! Thanks to @shelbyrossart at American Printing for creating these fantastic bags!


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