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Thank you next step for this opportunity. To speak on how isolating it can be with someone with a chronic illness especially since I haven’t met anyone with Prune Belly syndrome. https://twitter.com/nextstepfund/status/1639261570415878145
Sharing his experiences and working on Come and Walk a Mile was very important for Ethan, a Next Step participant. He wants to speak up for those living with a #raredisease, give them a voice, show them that they are not alone and they are part of a wider community. Find out why!
Sharing his experiences and working on Come and Walk a Mile was very important for Ethan, a Next Step participant. He wants to speak up for those living with a #raredisease, give them a voice, show them that they are not alone and they are part of a wider community. Find out why!
Herd, meet Stephanie! 💙
We are bringing back the IG takeovers in 2023! Follow along in our stories today as a member of our herd goes through a day in the life of a member of the #AYAcancer community! 🖤
Interested in a takeover?
Email Lisa@elephantsandtea.com for more info!
Do you know a high school student with #SickleCellDisease? Next Step’s STRIVE program is just that. Students will meet peers who face the same challenges caused by the disease. They'll play games and take part in group projects.
https://www.nextstepnet.org/event/strive-2023-spring-semester/2023-01-28/ to learn more.
Being diagnosed with cancer is one thing. All the staging scans and biopsies after your diagnosis is another. These tests are not only nerve wracking but they are also very invasive.
I Was a Perfectly Fit and Healthy 34-Year-Old (or so I thought)
I was diagnosed with Hodgkin's Lymphoma on December 19th, 2016. I can't even put into words how gut wrenching ...
www.ihadcancer.com
We are proud to have collaborated with @kendallsqorch and Pfizer to help lift the voices of people with rare disease through our original song, Come and Walk a Mile.
Watch Kristo Kondakçi, Musical Director at Kendall Square Orchestra, share his feelings about the power of music.
One of the challenges that many young people with a chronic illness may face is difficulty in expressing themselves. Finding it hard to share their experiences or to advocate for themselves.
Last year alone, we hosted 161 Song Studio sessions. One-on-one sessions with our music therapist in which we aim to let these young adult participants find their voice. to discover new ways to advocate for themselves.
#IBelieveInMe #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #MusicTherapy ...
Sharing his experiences and working on ‘Come and Walk a Mile’ was very important for Ethan, a Next Step participant. He wants to speak up for those living with rare and chronic diseases, give them a voice, and show them that even if they feel isolated, they are not alone and they are part of a wider community.
Ethan joined our collaboration with @pfizerinc and @kendallsquareorch and some of his Next Step peers to record a live version of our song, Come and Walk a Mile. Find out more from Ethan!
Please share so more young people like Ethan know they have a safe community at Next Step to practice using their voice.
#RareDisease #OriginalSong #RareDiseases #RareDiseaseCommunity #Boston #CambridgeMA ...
Do you know a high school student with sickle cell disease looking for a community? At Next Step’s STRIVE program, we’ve created just that. In this after school program, students will meet peers who face the same challenges caused by the disease. They`ll play games, take part in group projects, like writing a comic book, but most importantly, they’ll do it together.
STRIVE offers programs in Boston, New York City, and Washington D.C. visit the link in our bio to learn more about this amazing program for high school students with sickle cell disease. Enrollment is ongoing through April.
#IBelieveInMe #STRIVE #SickleCellDisease #HighSchool #Community #Mentorship ...
We absolutely love posting pictures of our Canine Affairs Department and today we have an excuse to do so, National Puppy Day!
Hello from the best office mates you could ask for!
#IBelieveInMe #NationalPuppyDay #CanineAffairs #OfficePets #Puppies ...
Making music has the power to evoke deep feelings and transport listeners into other people’s lives. That’s why we are proud to have collaborated with @kendallsquareorch and @pfizerinc to help raise up the voices of people with rare and serious illness through our original song, Come and Walk a Mile.
Watch as Kristo Kondakçi, Musical Director at Kendall Square Orchestra, shares his feelings about the power of music.
➡️ Please share so more young people can discover the power of songwriting.
#RareDisease #OriginalSong #RareDiseases #Songwriting ...
The Next Step staff spent yesterday reflecting on the history of the organization and the amazing changes that we`ve gone through since Bill started this journey in 2000.
We also tried to picture all of the amazing things this group of superstars will be bringing to Next Step in the future. We can`t wait to find out!
#IBelieveInMe #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #StaffDevelopment #TeamDevelopment ...
“I am different and I’m ok with that.”
These are the powerful words from Valerie, a Next Step participant who lives with a rare condition. Valerie wants the world to know how she feels, and she wants to be the voice for others who don’t feel confident to speak out yet. That’s why she collaborated with Kimberly, Next Step’s Director of Song Studio, and her peers to sing Come and Walk a Mile, which tells the story of living with a rare disease.
Find out more about Valerie’s story and what this anthem means to her #raredisease
➡️ Please share so more young people like Valerie know they have a safe community at Next Step. ...
We partnered with @pfizerinc and @kendallsquareorch to develop a live version of our original song, `Come and Walk a Mile`. The song tells the story of living with a rare disease and what it`s like to walk a mile in their shoes. We wanted this song to become an anthem for the community, a chance to celebrate successes and connect with others through shared experience.
➡️ Listen to `Come and Walk a Mile` in our bio link! 🎼
#RareDisease #OriginalSong #Song #RareDiseases #RareDiseaseCommunity ...
