June 1, 2017
iCAN is spotlighting ‘World Sickle Cell Day’ on June 19th. Sickle Cell Disease is an inherited anemia in which red blood cells take on a sickle shape. With 200,000 cases diagnosed each year, patients experience a variety of symptoms from fatigue, pain and infections. Our International Children’s Advisory Network understands the need for early detection and prevention. To inquire about how iCAN can support pediatric medicine, research and innovation, contact us today!
May 1, 2017
With May spotlighting Asthma, Allergy and Celiac Disease Awareness as well as Organ Donation Month, our iCAN youth recognize the value of creating treatments to help our pediatric population so that they can stay healthy throughout childhood. Working with many wonderful organizations through iCAN, our teams of young people from around the world share the mission of spotlighting the need for therapies that work directly with pediatric patients to provide the best possible outcomes. If you would like to learn more and to share our mission, contact us today!
The Future is Ours
Written by Simon Stones, GenerationR
April 3, 2017
In the words of Barack Obama, “The future belongs to young people with an education and the imagination to create.” On many occasions, I’ve painted a picture in my head of the world I hope will exist in the future. Instant access to healthcare. Education for all. Equal opportunities for everyone. Some may say these are impossible, others will say they’re unachievable. At the end of the day, it’s down to people like you and I to prove that anything is possible.
Improving health through research
Healthcare has changed dramatically in recent years. Technology has played an influential role in these changes, particularly in the last decade. Technology has revolutionised all aspects of medicine – from diagnostic tools to new surgical techniques, and from electronic health records to social media which enables people with similar experiences to talk and learn from each other. In the United Kingdom, 2006 was a momentous year for healthcare as the Department of Health funded the National Institute for Health Research (NIHR). The aim of the NIHR is to lead the translation of research to benefit people in England through the National Health Service (NHS). The NIHR has funded many initiatives over the years, including GenerationR. GenerationR is the combined voice of several young people’s advisory groups (YPAGs) based around England, who meet regularly to learn about healthcare research while supporting the design and delivery of research across the country.
The benefit of involving young people in research
It makes complete sense to involve young people who will be directly affected by research and the outputs of research. Indeed, there are many benefits to involving young people in research. Introducing the perspectives of young people benefits the entire research and development process, as young people may be able to identify research issues that professional researchers are unaware of. Young people can also help to ensure that any research tools used are worded in a language that is easy to understand by young people who have no experience of research. Such tools can include leaflets, questionnaires, and reports. In addition, young people also benefit the research dissemination process. When young people present research findings and share personal experiences of living with health conditions, the key messages arising from research can have a much greater impact on multiple audiences.
It’s not all about benefiting research and society either. If young people are involved in research and are actively contributing to the research process, it’s only right that they get something out of it too. While young people can gain recognition for their involvement, sometimes in the form of payment, there are also altruistic reasons for getting involved in research. Enabling young people to be actively involved in issues affecting them, as well as contributing to their communities and the future care of other young people is hugely satisfying. Young people involved in research can also develop a variety of skills which will benefit their future careers, such as research skills, time management skills and communication skills. Many young people also find the experience positive, helping them to grow their confidence and self-esteem. Such opportunities can also enable young people to learn about research and services available to them, which can benefit their health and wellbeing.
What you can do to get involved in research
There are so many opportunities available for young people to get involved in research. iCAN has the unique position of bringing together YPAG chapters from around the world who are already working alongside researchers to address and improve healthcare research. Getting more involved in different research activities is incredibly easy. A simple email to iCAN and/or individual YPAG chapters to see how you could get involved in different activities is an easy way to see what is available, and facilitators of local YPAG chapters may be able to direct you to other groups who are looking for young people to involve in research. The most important thing that you can do is stand tall, be honest, share your opinions, and remember that you are an expert too!
April 1, 2017
April is National Autism Month! Focusing on pediatric needs within medical health is of great importance to our iCAN advisors. Together, through better health, participatory medicine and research, our kids can live happy, healthy lives. To learn more about our community engagement efforts of youth participating in research and medicine, contact us today!
March 1, 2017
The first week of March is ‘Patient Safety Week’. iCAN youth are leading role-models for sharing the knowledge of pediatric patients by establishing a culture of engagement, community building and shared-best practices among youth, doctors and medical staff through improved communication. To learn more about iCAN, contact us today!
February 1, 2017
Rare Disease Day is February 28th. iCAN knows the importance of spotlighting all of our children from around the world for the ongoing and urgent need to create and implement pediatric research leading to a cure by sharing the needs of the youth community. If you would like to learn more about the International Children’s Advisory Network, contact us today!
KIDS Connecticut Welcomes New Friends
January 23, 2017
KIDS Connecticut had some very special guests at their January meeting last week…
Dr. Hidefumi Nakamura, Dr. Tsutomu Harada, and Child Life Specialist Kana Harada traveled all the way from Tokyo to meet with the KIDS Connecticut team and learn more about how they can potentially start up a new iCAN chapter in Japan! This would be iCAN’s very first Asian-based team, furthering the network’s expansion and incorporating representation from a much wider geographical range. They also gave us a lesson in origami, which Japanese children learn at as early as 3 years old. It’s also a soothing activity that Child Life Specialists use with young patients during their hospital stay in Tokyo. You can see the KIDS Connecticut team pictured above with our guests and their very own origami cranes!
We’re excited to see what is to come for iCAN and this potential new team!
January 1, 2017
Happy New Year! January spotlights Thyroid Disease month. Our community of iCAN youth understands the direct impact of thyroid disease on youth. While often mistaken for an adult-only disease, our youth leaders recognize that children are often diagnosed at early ages with Hashimoto Thyroid Disease or Graves’ Disease; requiring immediate treatment. Sharing the need for early detection along with the necessity of ongoing research leading to a cure is a core value for all of our iCAN youth ambassadors. To partner with our iCAN youth ambassadors, contact us today!
SPOTLIGHT: The Ohmer Family
December 11, 2016
Our first spotlight focuses on the Ohmer ladies from our KIDS Michigan chapter. Read on to learn more about this amazing family and why they support pediatric clinical research!
From left to right: Reece, Olivia, Amy
“On the outside, I look like any other teenager. I may look like your own daughter, your cousin, even your best friend. On the inside, my body looks like less than 5% of the total world’s population – both children and adults. My body is constantly fighting to stay healthy. My body has been diagnosed with Type 1 Diabetes, an autoimmune disease with no known cause and no cure… YET.
I share this with you not because I want sympathy, but because sometimes, I can’t just be a teenager like all of the other ones that you may know. I am my own caregiver and taking care of my health is a priority. When I check my blood sugar, I have to make life-sustaining decisions on the amount of insulin I need or the glucose that I must eat – and all of this needs my attention, right there and then. I say YET to a cure because I have a team that supports me and that team is made up of adults like my parents, my doctors, and my researchers that work tirelessly to help me battle this disease. This team has made a choice to help by creating Clinical Research trials that allow me to participate so that we can create ways to make living with T1D better for all kids like me. These research projects include testing new diabetes medical apps, trying new infusion therapies and even sharing journals from my daily life.
I feel lucky because while I live with Type 1 Diabetes today, I know that it isn’t going to be forever. With my family, my team and the opportunity to participate in Clinical Research, we will have a cure for Type 1 Diabetes during my lifetime.”
“Ten years! I have been living with Type 1 Diabetes for a lifetime: My entire lifetime. What has changed during your lifetime? Maybe there wasn’t microwaves or GPS. Maybe there wasn’t cell phones or computers? I can tell you that in my lifetime, thanks to Clinical Research opportunities, I have helped to test new blood sugar meters that are smaller so that my fingers and body hurt less. I have tried new insulin therapies to help determine if my medication was effective for my growing body. I can tell you that I helped to make an app so even the littlest children could communicate about how they were feeling. I can tell you that I helped doctors to understand what and how little kids eat, so that they could better educate families on nutrition. I can tell you that without Clinical Research, none of this would have been possible and I might not be able to do all of the things that I love to do like shooting hoops, playing golf, getting a lead role in my school play and even just hanging out with my friends.
If you want to support kids during their lifetime, please consider supporting Clinical Research, so all kids are able to be the best!”
“As you can imagine, having both of your daughters, your ONLY daughters, diagnosed with Type 1 Diabetes is difficult. However, from a very early age (three years old to be exact), my husband and I found that it helped our youngest daughter (first to be diagnosed) to feel empowered by sharing her knowledge of the disease that she were living with. Our very first clinical research project was participating through video recordings of meal planning with two young researchers that were trying to establish toddler eating habits to determine more effective medication dosages – something that can be very life-threatening for young children if the wrong dose is dispensed. Our youngest loved hearing that she was helping other little girls and boys and she took the study very seriously, often asking how the other children were feeling and if they were better. Not long after, our family was asked to participate in multi-year study about children diagnosed at a young age and their health outcomes. Again, our youngest daughter shared that she felt like it was important to share what she had learned with others as a way to pay it forward. That same year, our oldest was diagnosed with Type 1 Diabetes too. With shock, we learned that our participation in Clinical Research was even more meaningful than imagined. That’s the thing about helping others… it is more far-reaching than one can imagine, yet ultimately, it can touch close to home. Thank you for supporting Clinical Research as it truly provides the best outcomes for all of our children!”
-Amy, Mom of Two Daughters Living with Type 1 Diabetes