28 Jan 2019
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6 Sep 2018
We are so excited that young adults at the #XPFSG National Conference will be touring @WichitaState and will hear from their Disabled Student Services director, a university professor, and a student with XP about planning for and attending college with XP! #XPYA #ThisisXP
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24 Apr 2018
2014 Documentary "Hidden From Light" follows San Diego dermatologist (and XPFSG medical advisor) Bari Cunningham on a humanitarian trip to a remote Guatemalan village to treat XP children. WARNING: Video includes graphic medical images. vimeo.com/98195429 #ThisIsXP
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17 Apr 2018
XP has no FDA-approved, insurance-covered treatments, and UV-protection expenses make XP a huge financial burden. Your tax-deductible gift to #XPFSG leverages our ability to connect families with resources and researchers with families. Please donate at xpfamilysupport.org.
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14 Apr 2018
Want to protect your hands from damage? Our long-time friends and supporters FOXGLOVES (@glovesulove) have a full line of super-soft gloves (and hats!) for all your Spring gardening! And of course XP-safe gloves as well! foxglovesinc.com foxglovesinc.com/collections… #xpfsg
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10 Apr 2018
Wonder what an XP dermatology visit is like? Follow along with our friends, XP patient Graycen and her mom Kim in this clip from The Doctors. Bonus: Guest appearances by XP physician Bari Cunningham and XPFSG Executive Director @MicheleMilota! #ThisisXP youtube.com/watch?v=r2QqNiFi…
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30 Mar 2018
Planning for the XPFSG National Medical Conference is underway! What topics would you like to see in addition to medical/research updates? XPYA Young Adult Meetup topics & outing ideas? What do your kids want to do at Firefly Kids Camp? Let us know! contact@xpfamilysupport.org
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25 Mar 2018
Well said, Paris! You are a fantastic advocate for XP. Keep using your voice~we'll keep listening! @MidnightSun_Mov #ThisisXP #XPYA #XPFSG xpfamilysupport.org
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18 Mar 2018
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18 Mar 2018
With protection, kids with XP go to school and do many of the same activities as their friends. The downside? It can get very hot, and sometimes people make fun or think they are wearing a costume. We think young @amilota27 & Graycen look adorable--and safe! #ThisisXP #XPFSG
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14 Mar 2018
The release of @MidnightSun_Mov has inspired one of our college-aged friends, Paris, to compose this beautifully-written post to share her thoughts about her XP with others. Thank you for shining a light on XP, Paris! #ThisIsXP @OpenRoadFilms #XPFSG (shared with permission)
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13 Mar 2018
ALT XP kids can do anything with UV protection! #ThisisXP #XPFSG
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12 Mar 2018
Way to go Vanessa Mohler! Thank you for creating this awesome awareness video to share on XP and your journey! #XPFamilysupportgroup #RareDiseaseDay #XPFSG #ThisIsXP
safeyoutube.net/w/vLTc
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12 Mar 2018
Wouldn’t it be amazing if a group of our XP teens could attend the premiere of Midnight Sun! It would be great to show the faces of XP! @OpenRoadFilms @MrScottSpeer @bellathorne @PSchwarzenegger #ThisIsXP #XPFSG
11 Mar 2018
Thanks to all the @MidnightSun_Mov press coverage, we've been feeling the love from folks who want to learn more about XP! Here's info about XP and how XPFSG supports these 1-in-1-million patients and families. @OpenRoadFilms @MrScottSpeer @bellathorne @PSchwarzenegger #ThisIsXP
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11 Mar 2018
Thanks to all the @MidnightSun_Mov press coverage, we've been feeling the love from folks who want to learn more about XP! Here's info about XP and how XPFSG supports these 1-in-1-million patients and families. @OpenRoadFilms @MrScottSpeer @bellathorne @PSchwarzenegger #ThisIsXP
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8 Mar 2018
So wonderful of you to invite Amy to the premiere!! She will be a great date and an excellent representative for @XPFSG. Thanks for helping to bring awareness to this very rare disease and the rest of us living with XP on a daily basis!
13 May 2016
XPFSG has been notified that there is an XP Child (10) up for adoption. He is a cool kid!contact@xpfamilysupport.org
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27 Apr 2016
Donuts for XP! Thank you Feltner family for your Krispy Kreme file drainer benefitting XPFSG!
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24 Jan 2016
Thank you Brad Paisley for always taking the time for our XP Family! #XPFSG #BradPaisley
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