Stacey DeCillis (@stacey_decillis) 's Twitter Profile
Stacey DeCillis

@stacey_decillis

mom to 3, NF mom working to find a cure for #jacksonswarriors,

ID: 841087249743765505

calendar_today13-03-2017 00:43:21

667 Tweet

336 Followers

339 Following

Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

“Approximately 7-15% percent of NF1 patients may develop MPNSTs (malignant tumor), which currently have no cure. Earlier diagnosis could offer patients more options…” Hopeful and grateful-all because of the support and work of Children's Tumor Fdn-we never stop fighting to #endnf

Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

On September 11th, we pledge to do a good deed for others because, in my students words, “to make us feel united like 9/12”, “because it’s the least I can do…”, and “to remember my uncle who I never met because he was lost on 9/11” Never forget.

On September 11th, we pledge to do a good deed for others because, in my students words, “to make us feel united like 9/12”, “because it’s the least I can do…”, and “to remember my uncle who I never met because he was lost on 9/11” Never forget.
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It’s #theend of an era for this specific view… of course I had to get out here 1 more time! Started my day with first photo… ended it here! Montauk will still be a summer destination - just not on a different deck!

It’s #theend of an era for this specific view… of course I had to get out here 1 more time! Started my day with first photo… ended it here!  Montauk will still be a summer destination - just not on a different deck!
Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

Meet NF hero and actor Adam-using his talents to raise awareness for NF1 around the world-read this article! ‘A Different Man' Star Adam Pearson Says His Facial Disfigurement 'Opened Doors' (Exclusive) people.com/a-different-ma… via People

Children's Tumor Fdn (@childrenstumor) 's Twitter Profile Photo

A monumental breakthrough in NF treatment! 💙💚 The FDA has given the green light to Gomekli (mirdametinib)- making it the 2nd ever approved treatment for NF and the first for adults. Today, we celebrate the end of a long wait! #FDAApproved #NFtreatment ctf.org/news/its-a-go-…

A monumental breakthrough in NF treatment! 💙💚 The FDA has given the green light to Gomekli (mirdametinib)- making it the 2nd ever approved treatment for NF and the first for adults. Today, we celebrate the end of a long wait! #FDAApproved #NFtreatment ctf.org/news/its-a-go-…
Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

My son-and fellow NF Heroes-filled with hope, optimism and promise of a cure Today-they found out congress eliminated $25 million in government funds towards that goal They are still optimistic and full of hope for a better future-Just a new obstacle to overcome. #endnf

My son-and fellow NF Heroes-filled with hope, optimism and promise of a cure

Today-they found out congress eliminated $25 million in government funds towards that goal

They are still optimistic and full of hope for a better future-Just a new obstacle to overcome. #endnf
Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

This is why we have to continue the work to finding a cure. Take a listen-you won’t be disappointed. What losing (and regaining) my hearing taught me about resilience | Matt... youtu.be/g_LsTk5gZNE?si… via YouTube

Stacey DeCillis (@stacey_decillis) 's Twitter Profile Photo

This year-NF Awareness day means raising awareness so we can convince gov to allocate funding to research again-so our heroes can feel seen and understood-continuing to find effective treatments for those who need it. And finding a cure to #endnf #iknowafighter #jacksonswarriors

This year-NF Awareness day means raising awareness so we can convince gov to allocate funding to research again-so our heroes can feel seen and understood-continuing to find effective treatments for those who need it. And finding a cure to #endnf #iknowafighter #jacksonswarriors