The XP Family Support Group is dedicated to improving the quality of life of those with xeroderma pigmentosum. Visit xpfamilysupport.org for more info!
Joined February 2012
- Tweets 273
- Following 560
- Followers 186
- Likes 79
104 Photos and videos
Pinned Tweet
29 May 2018
@MidnightSun_Mov (starring @bellathorne & @PSchwarzenegger, directed by @MrScottSpeer) is being released on digital next week - Now's a great time to share the XP fact sheet and raise awareness and support for patients and families! @XPFamilySupport #ThisisXP
1
28 Jan 2019
4
19 Nov 2018
Did you know that acrylic fingernail application involves direct exposure to UV light ~ which can increase skin cancer in the fingers and under the fingernail? #themoreyouknow #besafe
1
3
XPFamilySupportGroup retweeted
10 Nov 2018
2018.11.09 Hat Making for Delizah 2018 XPFSP Conference Wichita KS #xerodermapigmentosum #thisisxp @xpfamilysupport @ Drury Plaza Hotel Broadview Wichita instagram.com/p/BqAdJ9dgig7t…
1
1
XPFamilySupportGroup retweeted
10 Nov 2018
This week I'm at a conference to learn about my daughter's rare condition called xeroderma pigmentosum. It's great to learn together as a community. #ThisisXP
1
1
1
10 Nov 2018
Great first day at the XP National Medical Conference! We learned about cool advances in XP research, young adult advocacy and life after high school, and an amazing vision for inclusion through Positive Exposure Foundation. Can't wait for tomorrow!
6
6 Nov 2018
We are looking forward to seeing all of our XP friends in Wichita this weekend for the XP Family Support Group National Medical and Family Conference - including Firefly Kid's Camp and #XPYA Young Adult Meet-Up!
3
10 Oct 2018
Today is #WorldMentalHealthDay! Be kind to yourself! Take a walk, talk to a friend, do something creative, and breathe. Everybody needs help sometimes, and there is no shame in asking - repeatedly that's what it takes! - for support. You matter. Take care of you! #BreakTheStigma
2
6 Oct 2018
This is awesome, Peyton! Thanks for shining a light on XP! realsimple.com/work-life/lif…
1
2
3 Oct 2018
REMINDER! Registration for the XP National Medical Conference closes this Friday 10/5. Sponsorship opportunities are still available! Registration includes Firefly Kids' Camp, #XPYA Young Adult Meet-Up, and family fun activities with all your XP Friends! xpfamilysupport.org/2018/02/…
1
3
22 Sep 2018
Only two weeks left to register for the National XP Family Medical Conference! Registration includes all workshops, meals, lodging, and entertainment, as well as Camp Firefly and XPYA Young Adult Meet-up. Deadline to register is 10/5! xpfamilysupport.org/2018/02/…
1
1
15 Sep 2018
Fall is a great time for ALL kids to explore how the outdoors comes alive at night! Look what our friend Pax is discovering! #ThisisXP (facebook.com/pacificnightssu…)
2
8 Sep 2018
Registration for the National Medical Conference closes 10/5. Registration fee includes conference, meals, hotel, and activities including Firefly Kids Camp and XPYA Young Adult Meet-up for a family of 4. Register OR Sponsor the event at: xpfamilysupport.org/2018/02/…
1
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
2
2
23 Aug 2018
The Children's Inn at NIH provides invaluable respite care to our families as they participate in medical research. Please read the following statement about a structural crisis at the Inn and consider making a donation at this critical time.
22 Aug 2018
To follow updates on this emergency, visit our website at childrensinn.org/emergency.
4
4
10 Aug 2018
We are SO EXCITED! Rick Guidotti of positiveexposure.org will be presenting and taking photographs at the XP Family Support Group National Medical Conference in November! @PositiveExpo seeks to celebrate diversity through the arts, and Rick's work has been featured worldwide!
1
1
5
6 Aug 2018
Research with brave XP rare disease patients have taught doctors much of what we know about the most common form of cancer - skin cancer. It's important for everyone to #CareAboutRare! Looking forward to learning more about #ThisIsNIH! #ThisisXP #CancerMoonshot
Did you know the National Institutes of Health is the largest biomedical research agency in the world? With an annual budget of $37.3B, and comprised of 27 Institutes and Centers, each with their own research agenda, we bet there’s a lot you don’t know about us. #ThisIsNIH #NIH
2
3
4 Aug 2018
Just the idea of intentionally exposing an infant to UV makes us cringe! Wear your sunscreen, friends! #TheMoreYouKnow
2