Executive Director Bill Kubicek founded Next Step in 2001 with the support and guidance of the late actor/philanthropist Paul Newman. Both agreed there was an urgent need for services for young people with life-threatening illnesses—a group that was falling through the cracks as they transitioned into adulthood, both in terms of their medical “home” and their world outside the hospital or doctor’s office.
Advances in medical research and treatment in recent decades have dramatically increased survival rates for young people dealing with serious and chronic illnesses. In the 1970s, only 30% of these youth reached the age of 21. Today, more than 90% do. While survival should be celebrated—and believe us, we do!—the aftermath of aggressive medical treatments can wreak havoc on a young person’s health, social and professional life.
Many of these survivors may look and act just like any other young person, but on top of the typical challenges of young adulthood, they may struggle with growth and development, language and learning disabilities, mental health issues, infertility or other severe health complications. The additional burdens of managing a life-threatening diagnosis, intense medical treatment, and serious health issues may make the transition to adulthood and independent living seem overwhelming and next to impossible. Next Step exists to help young people face those challenges, envision their future, and take their own next steps to get there.
“The ideas and experiences of the young people we serve have been behind every program we have developed… and that will never change.”
From the first small-group retreats in 2002, Next Step programs and services have expanded over the years into a comprehensive offering of individual, small-group and large-group programs and services for young people between 16 and 29 who are living with the impact of cancer, HIV/AIDS and rare genetic disorders.
In partnership with the young people we work with, we have developed cutting-edge curricula and programming that specifically address their unique needs at this age and stage of life. Key components include: disease management education, medical self-advocacy training, and peer communities that support our participants as they learn, fail, and subsequently develop the resilience they will need to move forward in their lives. We often consult with leading medical institutions and organizations on how they can better serve young people facing serious illness.
Take a look at a brief timeline of highlights in our growth and progress:
- 2001 Next Step founded by Executive Director Bill Kubicek
- 2002 First small-group retreats for young people with cancer (Boston, Austin, Nashville)
- 2003 Contracted with National Hemophilia Foundation to develop and launch NYLI National Youth Leadership Initiative for teens living with bleeding disorders
- 2004 First weekend retreat for teens with sickle cell
- 2005 First retreat for HIV+ teens
- 2006 First weekend retreat for care-dependent young adults and their providers
- 2009 Launched music therapy program
- 2009 Launched Campference for HIV+ community
- 2010 Launch academic coaching program for teens with sickle cell
- 2010 Launched mentoring programming for HIV+ community
- 2011 Launched Campference for rare genetic disorders community
- 2012 Launched Campference for cancer community
- 2014 Built state-of-the-art recording studio at Next Step Central in Cambridge, MA
- 2016 Launched Campference for older young adults with sickle cell anemia
- 2017 Launched “on the road” Campference for HIV+ community
- 2019 Launched Studio Campference for young adults living with cancer, HIV and rare genetic disorders
- 2020 Launched Virtual Summer Campference for teens and young adults living with cancer, HIV and rare genetic disorders
In 2019, we hosted eight residential Campferences, more than 100 group day programs and approximately 240 individual sessions.
Since 2001, Next Step has served more than 7,000 young people from across the United States and around the world. We have built a reputation in the medical and social service community as a critical support for young people and their families, and are recognized as a leader on issues of transition for medically fragile young people. But despite all our accomplishments, we are inspired by the young people we work with to never stop learning, growing, and innovating.