Array Insights

🧩 We can’t complete the puzzle without YOUR piece! You could help reveal a connection never drawn about desmoid tumors, or add more nuance to something we thought we already knew by sharing your unique story with the DTRF Patient Registry at DTRF.iamrare.org. Part of a cooperative project with the FDA and NORD, the DTRF Patient Registry has been established to study the natural history of desmoid tumors. The more patients participating in the online study, the more can be learned. If you have ever had a desmoid tumor, you can participate. If you are the guardian or caregiver of anyone who has ever had a desmoid tumor, you can register and complete surveys on their behalf. 🔗 To start, simply set up an account at dtrf.iamrare.org and begin completing the online surveys. We hope that you’ll complete all surveys available to you, answering as many questions as possible, but you don’t have to do it all at once! We encourage you to complete what you can, save your progress, take a break, and return to the surveys again later. You’ll be able to see how your experience compares with others while completing the surveys. After you complete each one, you’ll be able to view aggregate data. Your story is a part of the puzzle. As the registry sponsor, DTRF employs best practices to protect data privacy and confidentiality. Participation in the DTRF Patient Registry is free and voluntary, and participants may withdraw at any time. Learn more at https://lnkd.in/eyDdpPMM and email us at registry@dtrf.org with any questions. Thank you for your actively taking part in your research!

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** Growing up with a sister who has Neurofibromatosis (NF) has been a constant source of inspiration for me. Despite the challenges she faces, her determination and motivation never waver. From doctor’s visits to managing symptoms that others can’t always see, she’s handled it all with strength and grace. This year, she’s achieving a huge milestone by earning her master’s degree — something that’s taken an incredible amount of hard work and perseverance. Watching her tackle not just the demands of school, but also the complexities of living with NF, has shown me the true meaning of resilience. The Children’s Tumor Foundation has played a big role in supporting her journey and our family. Their dedication to advancing research and providing resources has given us hope and a sense of community that’s been invaluable. I’m grateful for the impact they’ve had, and I’m proud to support their mission to find a cure for NF. Raising awareness for this cause is personal for me, and I’ll always stand by my sister and the NF community. Together, we’re fighting for a future where no one hast to face this alone." Corey Altman ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** In April of 2022 I welcomed my son to this world and a few short weeks later we would send him off into an MRI to check out why his eye had been swollen since birth. A plexiform tumor is what was revealed. Complex and wrapping itself like a spider web around his eye, face, jaw and part of his brain. At that time, he was 4 weeks old, so we had to just wait and see what happened. I went back to work and a couple weeks later he had a second MRI which revealed the tumor was growing and we needed to take action. I left my career and devoted my life to taking care of my son. Since then, he has had countless doctors’ appointments, 11 MRIs, two eye surgeries, has been in a clinical trial, and many, many therapies. I myself also have NF and although it presents itself a lot different in me, being a mom, especially to a medically complex baby, really taught me the importance of keeping up with my own health. I’ve participated in clinical studies, research calls, and volunteer with Shine a Light NF Walk and the Seventeen22 Foundation. To say these last two years have been a whirlwind would be an understatement but there have also been many blessings including Bryson’s third stable scan in a row, just last week!!! My hope is that one day we have a very effective treatment and cure for NF. Lindsey Marson ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

Many patients face a frustrating reality: their symptoms are dismissed. This was true for Alisa, whose chronic cough was misdiagnosed as bronchitis. When she advocated for herself, she uncovered a life-changing diagnosis—lung cancer. Alisa’s story highlights the power of self-advocacy and trusting your instincts. Read the full blog to learn why it’s crucial to listen to your body and push for the answers you need. https://lnkd.in/e4ahNSzh

Amidst other health challenges, Joe faced an unexpected twist: a bladder cancer diagnosis. His journey began fraught with uncertainty yet brimming with determination. Among the difficulties, Joe gleaned invaluable lessons. Read his inspiring story here: https://lnkd.in/gzUpM39C

October 29 is #WorldPsoriasisDay. If you're affected by psoriatic disease - whether you live with the lesions and joint pain or support someone who does - you are apart of a worldwide community.🧡We are here for you💜 #ThisIsPsoriasis https://lnkd.in/ggpSqW9a