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A special shout out and thank you to the talented photographer Kyle Klein and the amazing young people who recently helped us out with a fun marketing project at the Next Step office. We are so grateful for all of you and your support of our community. You’re changing lives.
Delayed & misdiagnosis can lead to an exorbitant amount of medical fees. Share this post to raise awareness about these financial challenges & advocate for better access to affordable healthcare. Learn about World Rare Disease Day: https://go.globalgenes.org/RDD-2024
#RareDiseaseDay
Our CEO, Charlene, our CMO, Nicole, our finance and operations lead, Bethany, and partner/advocate Kelly Ranallo ( founder and board member @rarekc , founder of Turner Syndrome Alliance, and advocacy for @sanofi ) are all ready to kickoff another day of #RareDiseaseWeek!
It is Day 3 of #RareDiseaseWeek and Capitol Hill day! Here is a rundown of what Mackenzie will be up to today, including talking to senators and representatives about the 5 legislative asks for the rare disease community!
#RareDC2024 #RareDiseaseDay #CareAboutRare #CapitolHill
We heard from Susanne, a rare patient diagnosed with 2 #RareDiseases, her journey to diagnosis, and periods of feeling isolated. “In sharing my story, I hope to shed light on others who are suffering in the darkness looking for answers…” Read her story: https://go.globalgenes.org/RDD-SYS-2
Join us as we discuss the urgent need for a sustainable system to support the patient organisations in the #RareDisease space. We have to engage society and industry to work with these charities in a new way.
https://bit.ly/RARE-REVinar-Burnout
#RDD2024 #RareDiseaseDay #Webinar
What a beautiful day in Boston yesterday for the @bostonmarathon !
A huge thank you to all of our runners Chase Carpenter, Tommy Bannan, Sean Foley, @valeriedegrez , and Joe Mueller.
We hope you`re all having a relaxing, post race Tuesday. We can`t thank you all enough for the amazing work, both running 26.2 miles, but also for helping Next Step to continue offering our free programs to teens and young adults living with chronic illness and to help them find their "I believe in me" moment.
#BostonMarathon #BostonMarathon2024 #IBelieveInMe #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #MusicTherapy #Mentorship
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A special shout out and thank you to @kylekleinphoto and the amazing young people who recently helped us out with a fun marketing project at the Next Step office. We are so grateful for all of you and your support of our community. You’re changing lives.
Visit Kyle’s website if you’re looking for a talented photographer in the Boston area: www.kylekleinphotography.com
#ThankYou #Photographer #Photography #Boston
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Today we are shedding some light on what some AYAs would like those in their lives such as family, friends and health care providers to know. It’s time to stop dismissing their concerns and feelings. Instead take time to listen and stand up for AYAs!
#ayaware #ayacancer #AYACancerAwareness #Teens #YoungAdults #Cancer #Community @stupidcancer
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It can be overwhelming to consider all the challenges facing AYA patients and survivors. Understandably, this can make it difficult to figure out the best way to show support and that you care. So we went straight to the source.
We asked our community to provide insight into the kinds of support they would most appreciate as they go through their cancer journey. Here are a few options, but keep in mind there are endless ways to support the AYA cancer community.
Including spreading the message about adolescent & young adult cancer.
#AYAWARE #ayacancer #AYACancerAwareness #IBelieveInMe #Teens #YoungAdults #Cancer #Community #MusicTherapy #Mentorship @stupidcancer
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We are here to support the AYA cancer community because they are a unique community with unique challenges. AYAs often do not have the same access to care compared to other age groups, and they experience disparities in diagnosis, treatment, insurance coverage, and outcomes. Disparities are compounded for AYAs from marginalized communities; BIPOC, LGBTQ+, Disabled and rural patients are likely to face additional burdens in their treatment and survivorship.
AYA patients have to navigate a confusing medical system, while also going through pivotal life moments like starting a career, finishing college, or finding love.
While there is support available, it`s not reaching all AYAs, and we have a long way to go to achieve true health equity for our community.
Join the movement and help us spread awareness and support for the AYA cancer community.
#AYAaware #AYACancer #AYACancerAwareness #IBelieveInME #Teens #YoungAdults #Cancer @stupidcancer
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Last week our program team hosted part 1 of our Guid to Adulting webinar.
The discussion was all about relationships.
Professional relationships, family and friends, and romantic relationships, they`re all different but they share common threads. the young people who joined us learned what some of these differences are, as well as an understanding of how they can navigate them.
A huge thank you to Maisy for leading the discussion!
We`re looking forward to part 2 of this series in just a few weeks!
#IBelieveInMe #Adulting #YoungAdults #ChronicIllness #Cancer #HIV #RareGeneticDisorders #Community #MusicTherapy #Mentorship
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The program team was at it again!
Last weekend, Casey, Emily, and Kepler were on the road at @holewallcamp to deliver some Next Step magic.
They discussed self-confidence and building friendships while living with a serious illness.
Thanks for hosting us!
#IBelieveInMe #TheHoleintheWallGangCamp #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #Mentorship #MusicTherapy
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"It`s been amazing to see the impact their programs have on the young people who attend them. The self confidence they gain, being able to achieve their goals and realize that their diagnosis doesn`t dictate who they are or what they can do, it`s been eye opening. As long as they continue to let us walk the 7 miles, I`ll be a part of Team Next Step!" ~@jbeachp , 4 year member of Team Next Step
The 52nd @falmouthroadrace is being held on August 18th! Team Next Step is looking to fill in its last few spots, so if you`re up for a 7 miler we`ve got you covered! Be a part of this great race and support the teens and young adults who rely on Next Step`s free programs.
Join us in Falmouth on the 18th or run, or walk, the 7 miles your own way.
Visit the link in our bio to sign up!
#IBelieveInMe #FalmouthRoadRace #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #MusicTherapy #Mentorship
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