Connie B Sorman

Do you know what Neurofibromatosis is? If not, ask me!! Passionate about my work to #EndNF.

[Connie B Sorman @Roo797]

@TODAYshow @HodaAndJenna I was on a Delta flight years ago in the second to last row and the airline attendant was clipping her nails behind me with the clippings flying over the seat at me!!

[Connie B Sorman @Roo797]

@RyanEversley Congrats!!!🍾

[Taylor Sundby, MD 🧬 @rtsundby]

The #1 cause of mortality in people with NF1 = tx-resistant MPNST #sarcoma. Arising within benign PN, MPNST are difficult to dx w/ delays resulting in incurable dz. We show that #cfDNA fragmentomics distinguishes MPNST's pre-malignant state, enabling early intervention! 🧵

[Children's Tumor Fdn @ChildrensTumor]

Kevin A., diagnosed w/ neurofibromatosis type 1 (NF1) not long after birth, takes things day by day. That's led him to 5K walks, NF Camp, Cupid's Undie Run, online support groups - & creative writing!

https://t.co/jmRsjfi6k0

Share your own Story of NF at https://t.co/iriaBicqXM

[Connie B Sorman @Roo797]

@stacey_decillis Yep. Jesse’s techs know him by name. They say, “Hey, it’s you again!” when he comes in. Prayers for stable, but thinking shrinking. ❤️🥰

[Connie B Sorman @Roo797]

@ryan_senne How about Pia or Vagus

[Children's Tumor Fdn @ChildrensTumor]

What a year! Read the 2022 TOP TEN Advancements in NF Research, which are now laying the groundwork for even more scientific developments in the future. Click here to read the top 10: https://t.co/iG9KjmguAQ

#EndNF

[Children's Tumor Fdn @ChildrensTumor]

This year is very special because we have two winners, two incredible volunteers who embody our mission to END NF in their personal, professional and volunteer lives. https://t.co/TEjbyyBPI2

[Children's Tumor Fdn @ChildrensTumor]

All week, we'll be showcasing this diverse group of committed people who work tirelessly throughout the year to help CTF fulfill its mission. First up: VOLUNTEER OF THE YEAR (2/)

https://t.co/TEjbyyBPI2

[Children's Tumor Fdn @ChildrensTumor]

At the NF Summit, we gleefully announced the Make NF Visible Community Recognition Awards to recognize volunteers, clinicians, researchers, community partners, + patient advocates from across the country & around the world, at every level of involvement, who #MakeNFVisible (1/)

[Children's Tumor Fdn @ChildrensTumor]

The #MakeNFVisible Researcher Award went to @chembiokevin, PhD, and a 2020 CTF Young Investigator Awardee; Dr. Tena Rosser accepted the Make NF Visible Clinician Award; and Dale Berg was presented the Make NF Visible Patient Advocate Award.

https://t.co/TEjbyyBPI2

[Children's Tumor Fdn @ChildrensTumor]

Magda Chlebus received the #MakeNFVisible Recognition Award for Global Reach. She has no personal connection to NF, yet has taken on CTF's mission as her own and has made NF something all European legislators think about daily.

https://t.co/dnJutOdH7d

#EndNF

[Children's Tumor Fdn @ChildrensTumor]

The mission of the Children’s Tumor Foundation is to drive research, expand knowledge, and advance care for the NF community.

#makenfvisible #endnf

[Children's Tumor Fdn @ChildrensTumor]

Love is in the air! And what better time than Valentine's Day Eve to revisit this convo we had w/ HS sweethearts Cole & Helen, who met shortly before Cole was diagnosed with neurofibromatosis type 2 --> https://t.co/2C9a2ijCYT
#EndNF #EndNF2 #NF2 #valentinesday2022 #lovestory

[Connie B Sorman @Roo797]

@purplevacktor Hey! We see you!

[Connie B Sorman @Roo797]

Always knew @nickfolk2 was a true friend of @ChildrensTumor, but this proves it! #EndNF

[New England Patriots @Patriots]

.@nickfolk2 typically takes field goals in white cleats, but Monday night, they'll shine bright blue.

His #MyCauseMyCleats represent the @ChildrensTumor Foundation: https://t.co/V696PUCxxX

[Children's Tumor Fdn @ChildrensTumor]

Thank you @BobSocci @Patriots @nickfolk2 for helping us get the word out that we need to #EndNF!

[Children's Tumor Fdn @ChildrensTumor]

We’re Thankful For You.

Click below to read a special Thanksgiving Day Message from Children’s Tumor Foundation President Annette Bakker. https://t.co/0VNj1tUQqd

[Connie B Sorman @Roo797]

@lisabubel Sometimes life is unbearable and doesn’t make any sense at all. This is one of those times. I can’t imagine the pain and heartache you and your family have already experienced with Landon’s illness and all to end up here, with such profound loss. You have my heart & prayers.

[Children's Tumor Fdn @ChildrensTumor]

Earlier this year we announced that the Discovery Fund awarded over half a million dollars to promising young investigators. Meet Sara Pardej who told us more about her research focused on neural underpinnings of attention in children with NF1 here: https://t.co/XbShUJE4B0 #EndNF